Such a well done documentary. I’m a pediatrician and learned about Cri Du Chat (cry of the cat) in school and residency, but never had had the care for a child with the syndrome in my private practice, because it is rare. My own child developed rheumatoid arthritis and uveitis at age 4. Laura died in 2019 at the age of 32. We gave out packets of Morning Glory seeds at her celebration of life service because they are a beautiful delicate flower but also a tough vine that will find a way over or around obstacles. Laura always found a way to get on with life despite her many medical woes which progressed through her life. We knew we wouldn’t have her forever; she knew it too because she told me one day “mom, I’m not going to live past 40”. So she did as much as she could, cared about people not things, and always had hope. I want to say to the parents that I know how exhausting and frustrating it can be to deal with insurance and doctors and pharmacies, schools, etc. I also know the joy of seeing a milestone achieved that was very hard won. Laura had lovely friends and their families that helped her, but treated her as normally as possible and I was so grateful for these “bonus” families in our lives. I’m so very glad she was my daughter and I miss her every day. I didn’t mean to make this about me, I just wanted to tell the parents that I understand some of what they experience and to remind them to take care of themselves as well. Much love from Laura’s mom. 💕🐝💕🎄🇺🇸
I'm so sorry to hear you lost your daughter, I understand why you wrote about her. It is gut-wrenching sometimes when you have a child with special needs or medical conditions. I understand, I have a child that has juvenile ankylosis spondylitis and juvenile arthritis. He has told me before "mom I don't think I'll be alive past 30". It breaks my heart. Despite his issues, he carries on and pretends nothing is wrong. Thanks for sharing your daughter's story.
My daughter has vascular Ehlers Danlos. She is 24. Has arthritis in every joint and the arteries are comprised. My heart felt sympathies are with you and your family.
Looks like an important amount of medical students including me have found this short documentery while searching for info about the condition. Thank you for sharing this wonderful story. I hope it will spread more awareness among society about CDC syndrome.
I lives with a young woman with cro du chats and she was so much fun. . She didn’t speak but used sing language. She was strong minded and determined . We loved sharing our lives with her . . My children learned sign language from her and she loved them.
It's so strange but very interesting, that they have difficulty walking & talking, yet still learn sign language... I've never even heard of this til just now.
@@elizabethbowie9753 not strange at all. Verbal language is different than visual language. Not being able to vocalize does not mean a lack of verbal understanding. Expressive language vs expressive language. Also walking is gross motor while ASL is fine motor and even if she cannot do all signs and a child may have some fine motor struggles they can still learn ASL with some differences in the way signs are made. Those around the individual learn that persons way to sign much like an accent when someone from the south in the US speaks but someone from the UK understands them
I am a teacher and just started working with two sisters that have Cri Du Chat. I think they are amazing and beautiful and I wanted hope that they will lead amazing lives where other people will get to see all that they have to offer. Thank you for sharing your story.
@@SophiaTheSophist Hi! It's called "cry of the cat" because of a distinct cry that many infants with the syndrome make that sounds like the meowing of a cat
my baby cousin was diagnosed with cri du chat and her parents are completely devastated because we’re from Chile and there are little to no resources for treatment here. Thank you for sharing your story and rising awareness.
Definitely hit up 5P- community yes its based in the US but it might help you find services nearby to help the cousin grow as best as possible. Just focus on the progression and getting better/learning. Throw away expectations and just do your best as a family member. Feeding tubes help at earlier ages and sometimes surgeries will be required to walk. Sign language is just as good as the regular languages. The key is being able to communicate with the child as best as possible to ensure they have a happy/good life.
I am a medical student. I was looking for something to help supplement my studies. Thank you so much for sharing. You have a very precious little girl. God bless your family.
I worked residentially with a kid with cri du chat, another one with angleman syndrome, several trisomy 21 (Down syndrome), several autistics and aspergers. All in the same house unit!!! Most amazing job I had for 10 years. Taught me truck loads.
Mind Mesh you are an amazing person to do that job and to take care of those angels 👼🏻 very curageus : hardest job in the world , lots of respect from a mom with autistic son
My cousin has this syndrome. She was not walking until multiple surgeries and she was around 7 or later. Your daughter is doing incredibly well. I know how hard it can be. Keep pushing and encouraging her. Best of luck and maybe my family will see you at the next 5P- conference.
I just want you to know that your child would not be walking if it was not for your diligence love and compassion for your daughter. So beautiful that she has two parents totally dedicated to her well-being. Most children are lucky to even have one parent that cares so much about their child and take so much time to do everything possible to make their life better. And this beautiful girl has two parents completely dedicated to her🤗 God bless you both!!🤍🤍🤍 Your daughter's future will be bright thanks to your perfect love. ✨
I watched their video and totally agree with your comments. I felt and could see, the total love and dedication to their beautiful daughter from her beautiful parents...may god continue to bless you all...
So close to home. My son was diagnosed with Cri du chat in 2004 . God has truly blessed us with an AMAZING medical team at the Kennedy Center, Montefiore and Blytedale. They're times when we felt lost and discouraged because his condition was so rare which makes it very hard to get services but through it all, they're some medical professionals like Dr. Lisa Schulman🙏, Tammy Fried and Nicole Martinee who made sure our son was not just a number. They exhaust every option possible to provide my son with the services he needed to have a functioning life today at 15 years of age. Today Brandon walks, run, communicate his needs and a lend the length of his tongue if need be😂. Thanks for sharing your story. God bless you and your family🙏💞
as far as I know all children including me with cri du chat are born like cry like a cat. its kind of the thing with cri du chat. we lose the cat cry a few months afterwards and it is all different for every person
Every child deserves parents like you 2. Your daughter is a beautiful reflection of your love & dedication to making her world a better place. It’s amazing to see how far she’s come. ❤
I worked as a direct therapy service provider for people with developmental disabilities for many years, and as an administrator in a State/federally funded Early Intervention Program with an emphasis on support for families and community-based resources. I moved into Older Adult services at a point- different and similar, too. Now retired, and so delighted to hear your daughter is thriving and your family's story and promotion of Early Intervention resources to others.
@@jenniferatkins3303don’t worry too much if and when baby gets diagnosed Chrisean Rock will be a mama bear to his needs plus she will definitely have a army supporters to help.
I remember when my little sister with cri du chat learned to walk, it took a long time and she worked soooo hard and I am so proud, like the first time she said “I love you” she was like 9 or 10 years old I cried so hard. I remember the first time she said mom and my mom sobbed. My sister loves to paint and she loves to draw, her drawing has improved so much in the past year she can draw faces now
we have a little boy - with CDC - and he looks like your "baby" - really - we have also experienced so many positive surprises - it is very exhausting, but also such a great feeling. Our little one can now also speak and at school he learns simple arithmetic and writing - so great! a lot greetings from Dresden / Germany
Look at these mighty people. Their love is so strong!! They see the worth in this magnificent child. What a gift: they shared their story with the world.
It's nice this child is functioning pretty well. The cases I saw as a nurse were very severely affected. Until I saw this video, I never knew they could be anything but wheelchair bound, unable to communicate, on a feeding tube etc.
People like these parents, through having to face such tough challenges because of having to raise a developmentally delayed child, find such resources of strength, love, compassion and tenacity within themselves. In order to allow their kid to reach their full potential, they've had to persist and be determined, day after day, week after week, for years without losing hope, just so that their child could eventually reach the milestone of walking, which most other parents can take for granted will happen when their child is around a year old. I do have great admiration for them. The fact that they dug even deeper, and raised money to help other children receive the care that they needed too, is absolutely remarkable and is very worthy of admiration as well. Their little girl gets a lot of enjoyment out of life and can appreciate all the beautiful things that our world has to offer, which of course is very gratifying to see.
I teach special education at a low income elementary school in Texas. The majority of our students get an hour of speech or OT therapy or less per month that’s provided by the school district. The case loads our therapists have is ridiculous. Most of our kids are on a waitlist for speech or other therapy outside of school. We never stop trying to teach our students new skills or give up hope. Sadly, in many cases how far a child progresses depends on how much money the families have to pay for outside therapy. It’s truly heartbreaking.
We need more support for parents to support their children at home. Therapists can provide great resources but too many sessions can be exhausting for the child.
@@windybeach2184 I absolutely agree. Many of our daily challenges in our classrooms could be minimized if parents were more aware and involved. It’s important to advocate for your child. Many of my parents believe teachers and therapists can work magic without them putting in any work at home. If I had one dream to come true it would be for parents to be forced to take educational classes on how to parent and navigate life with a special needs child if their child receives special education services. Sadly, many of my parents believe their child isn’t capable of learning and knowing how to follow rules because of their disability so they put little to no effort into teaching them. It’s sad all around. 😔
@@audreyrasmussonmost low income schools aren’t in compliance. But the thing is, if they don’t have the resources (staff etc.), they can’t really do anything. Parents can technically sue the district and make the district pay for an alternative appropriate placement in a private school of some kind, but most parents aren’t going to do that due to the money and time involved, or they just don’t know it’s an option
My Granddaughter has cri du chat. She was diagnosed at about 3 weeks old. She's now. We're in Australia and we couldn't even find a doctor that has ever seen a cdc child. She started walking independently at around 3 yo. My daughter has a blog called the honest pirate, melanie stephens. I know she has people from all over the world reading it, some are parents of cdc kids. Worth checking out.
This changes people in so many ways. Great effort and sacrifice of such parents and unconditional love for these amazing children is a testament to so many things. 💜
We have a little boy with cri du chat, i'd just like to say thank you for this video. She's absolutely magical :) our boy makes the same faces and laughs sound identical. much love x (edited for the spelling police)
My son has not been diagnosed with this exact syndrome, but he is autistic with a profound speech delay and so much of what these parents had to say could have come straight from my and my husband’s mouths. The immeasurable joy and love, but then there’s the hard parts too. I really appreciate their honesty, every child is different, but to hear from parents I can really relate to is so valuable.
❤️ warming, * I have a daughter born with Cru du chat .she's now 23 ** always so happy ..yes theirs struggles, but we all got em.. honestly she seems so happy * always .God 🙏 has all of us Truly..she had early schooling threw our local regional center, at 8 month to 3 years then went to special needs school from 3 to 18 , and she also young adult program from 19 to 21, after 18 years of school .* One morning she woke up and refused to go **! Lol so I'm giving her a year break**!! Soon as covid 19 is cleared up . I will find get another program to enjoy .
Thank you for sharing your story. This little girl is a miracle! And the strength I see in your little family, encourages my heart to keep moving forward and never lose hope
How wonderful that this beautiful child has such intelligent, loving and patient parents to give her the best possible chance in life. I hope Jordan is doing well 5 years on.
Thank you for this documentary and especially the comments about the therapists. My son has Agenesis of the Corpus Callosum, another condition with wildly differing prognoses, and thinking back to the therapists who worked with him in Early Intervention, we were so blessed... The memory of their hard work & kindness makes me tear up.
what a gorgeous gorgeous little girl. how joyful and intelligent she is. I truely admire you both as parents, getting to grips with a child with an inpairment of any kind is so difficult I know. I grieve for the energy I don't have anymore. my mind is like a big cotton wool ball. please take care of yourselves along the way, take time to reconnect with each other and do thinngs that you enjoy together. it is so so important.
You two are amazing parents! She will reach the stars with you both building her up, and you’ve gotten her every help in every way. Wish you all many many blessings! She is a beautiful little girl. Thanks for sharing this, I’d never heard of it !
I thank God u have such amazing resources. And such a beautiful child. So cute😍 Such dedicated, loving parents. Not many would be able to do what u guys are doing. God bless u💜
You both are absolutely amazing parents. Iam a mother myself can't imagine how much heart it takes to accept that, your child is different from others yet believe in the fact that different is beautiful. Thank you so much for sharing. Iam an early years teacher and studying further and this will definitely be going into my research into different areas of early development. ❤️❤️❤️❤️❤️❤️❤️❤️
Thsnk yiu so much for sharing your journey. I had never heard of Cru Du Chat… Your little daughter is absolutely adorable…She has her Daddy’s curly hair… it is so clear that this precious child has briught joy to yiur lives. She is so,lucky to have so much therapy..and living, intelligent parents. Watching her learn, walk, and communicate made me smile… God bless you all. ❤❤❤
Absolutely amazing video. Thanks for sharing. I'm doing a presentation on cri du chat for my peds class tomorrow and watching this gave me so much more insight.
Please dont be discouraged! She is doing great! I know nothi ng about this condition but my grandson is 4 and a half and is in speech therapy. He doesnt have any specific conditions just needs help with speech and from what ive seen with him and your daughter she is very smart and doing very good for her age!!
My grandson is non verbal, on the spectrum, and was so like this. They had early intervention and such great help and hundreds of therapies. But I have never heard of this.
i don’t know how parents of children with these kinds of problems do it. i can’t imagine the kind of love, emotional trauma, and disappointments they must deal with. they are totally amazing and wonderful people. i have so much respect and emotional support towards them. 🌹🌱
Thank you for your response! I wrote a book, Loving You Big, about our experience to talk about this more! Spread the word to change the narrative about how individuals with disabilities are seen in society.
This is really well done! Kiddos with this and other genetic disorders are so sweet. While attending a program for blind teenagers, I worked at a summer camp for kids with various disorders. They are some of the best folks I had the privilege of meeting.
I was studying genetics and discovered about cridu-chat syndrome ( deletion of short arm of chromosome 5).....she's so beautiful...lots of love from india..
This is a truly inspiring and heartwarming story. Seeing people work together like this is so wonderful. This is how we make things happen ... make things better. This is the true power of people working together.
Good work with this little girl ! I have seen cri du chat kids who were not doing any of this, but they were abandoned by parents, so no one to help them. It makes the difference. Hi from France.
So thankful that parents are trying to help children who have learning delays when it comes to movement. One of our grand twins (fraternal) has had Low Muscle Tone and did not walk until over 2 years old. Yes, he is walking and he has had physical therapy and now they are working with speech therapy. Our son and daughter-in-law are helping with both speech and sign language as one of the twins was born with low muscle tone whereas the other twin has no struggles. I had some developmental difficulties for which I was mocked by my parents and siblings, I was called “defective”. Calling a name was so much easier than trying to make an effort. Our one son who had some learning delays, I took him everywhere, got him in Head Start and worked with a nutritionist. I never once told anyone he was “defective”. I even was being told this as a teenager too. I have a high IQ, that I was ever treated this way is very hurtful. My brother heard these words too and though it was about him, he was born with an inguinal hernia and he committed suicide when I was 22, just before my birthday. He was a very talented and bright person. I have self-worth issues to this day because of the heartless upbringing I endured. Love your child and get them all the help they need. They are worth it.
You guys are amazing parents. Your child seems happy healthy and well loved. So precious. This video was uploaded 7years ago please could you give an update of her development to date. I appreciate you sharing this.
So many challenges we have never been made aware of. Thank goodness there are great support providers to help us in need. Years ago these precious children would have been locked away in an institution. We should never think of what they can't do but rather on what they can do and overcome. These parents are blessed and challenged but our challenged gifts to us enrich our lives in ways you couldn't imagine. It is not easy or always pleasant dealing with some of the challenges presented but nothing in life is truly easy and filled with roses.
Thank you for watching our film! Jordan is much older than that! She was born in 2011. Visit Leah's website lovingyoubig.com/ to learn more about how the story continued!
Finding this video in 2022 and Mr. Moore actually works at the high school I went to, the creator of this documentary used to be the video teacher. As someone who likes to watch medical documentaries, it’s cool to see how someone in my community has created this to spread awareness
@@emilydombroffvideos not OP but it just popped up in my feed today. I don’t know why. I follow littlehooves, Nate the Hoof guy, and Sheepishly Me, Anglican and Catholic channels, and a capella singers. Lovely video and so helpful, I’m sure, to parents facing the challenges of cri du chat. Best wishes!
Never heard it.. until I researched it for my medical exams.. and laaaa.. came across this wonderful documentary.. i understood it so well.. not because they described it very well but because it made me understand and feel the pain and happiness of the parents... Thnq so much for this wonderful video.... hope lil Jordan is doing well
Such a well done documentary. I’m a pediatrician and learned about Cri Du Chat (cry of the cat) in school and residency, but never had had the care for a child with the syndrome in my private practice, because it is rare. My own child developed rheumatoid arthritis and uveitis at age 4. Laura died in 2019 at the age of 32. We gave out packets of Morning Glory seeds at her celebration of life service because they are a beautiful delicate flower but also a tough vine that will find a way over or around obstacles. Laura always found a way to get on with life despite her many medical woes which progressed through her life. We knew we wouldn’t have her forever; she knew it too because she told me one day “mom, I’m not going to live past 40”. So she did as much as she could, cared about people not things, and always had hope. I want to say to the parents that I know how exhausting and frustrating it can be to deal with insurance and doctors and pharmacies, schools, etc. I also know the joy of seeing a milestone achieved that was very hard won. Laura had lovely friends and their families that helped her, but treated her as normally as possible and I was so grateful for these “bonus” families in our lives. I’m so very glad she was my daughter and I miss her every day. I didn’t mean to make this about me, I just wanted to tell the parents that I understand some of what they experience and to remind them to take care of themselves as well. Much love from Laura’s mom. 💕🐝💕🎄🇺🇸
I'm so sorry to hear you lost your daughter, I understand why you wrote about her. It is gut-wrenching sometimes when you have a child with special needs or medical conditions. I understand, I have a child that has juvenile ankylosis spondylitis and juvenile arthritis. He has told me before "mom I don't think I'll be alive past 30". It breaks my heart. Despite his issues, he carries on and pretends nothing is wrong. Thanks for sharing your daughter's story.
That was so kind of you to share, thank you!
Through your own healing you help others heal. Absolutely share about your daughter; and don’t EVER feel guilty about it!!
My daughter has vascular Ehlers Danlos. She is 24. Has arthritis in every joint and the arteries are comprised. My heart felt sympathies are with you and your family.
I was diagnosed w jra when I was 2....I'm 34 now and I can feel my mortality, it's been a very long journey
Looks like an important amount of medical students including me have found this short documentery while searching for info about the condition. Thank you for sharing this wonderful story. I hope it will spread more awareness among society about CDC syndrome.
This syndrome was missed in my nursing textbook but showed up in a PowerPoint. So here I am researching
I have cri du chat
@@aliceramdom.s I hope things are going well for you. I would like to hear more about your story
Lkkjjj Jim noo
@@aliceramdom.s
I'm sorry to hear that.
These parents are an inspiration… to all parents.
Thank you so much! That means a lot to us. She is now 11 years old with twin brothers!
Very inspirational family as I have a daughter with this syndrome as well The Book is amazing as well
I lives with a young woman with cro du chats and she was so much fun. . She didn’t speak but used sing language. She was strong minded and determined . We loved sharing our lives with her . . My children learned sign language from her and she loved them.
It's so strange but very interesting, that they have difficulty walking & talking, yet still learn sign language... I've never even heard of this til just now.
@@elizabethbowie9753 not strange at all. Verbal language is different than visual language. Not being able to vocalize does not mean a lack of verbal understanding. Expressive language vs expressive language. Also walking is gross motor while ASL is fine motor and even if she cannot do all signs and a child may have some fine motor struggles they can still learn ASL with some differences in the way signs are made. Those around the individual learn that persons way to sign much like an accent when someone from the south in the US speaks but someone from the UK understands them
When you say loved instead of love, it means past tense & i began to wonder is she still alive &/or still in your lives?
I’m a school bus driver and I work with special needs children. Your Video is so powerful positive. Thanks for sharing.
I am a teacher and just started working with two sisters that have Cri Du Chat. I think they are amazing and beautiful and I wanted hope that they will lead amazing lives where other people will get to see all that they have to offer. Thank you for sharing your story.
why is it called cri du chat? it means cry of the cat... ?
@@SophiaTheSophist Hi! It's called "cry of the cat" because of a distinct cry that many infants with the syndrome make that sounds like the meowing of a cat
my baby cousin was diagnosed with cri du chat and her parents are completely devastated because we’re from Chile and there are little to no resources for treatment here. Thank you for sharing your story and rising awareness.
dam thats rough
Contact this charity mentioned towards the end of the video, it is for helping parents.
Definitely hit up 5P- community yes its based in the US but it might help you find services nearby to help the cousin grow as best as possible.
Just focus on the progression and getting better/learning. Throw away expectations and just do your best as a family member. Feeding tubes help at earlier ages and sometimes surgeries will be required to walk. Sign language is just as good as the regular languages. The key is being able to communicate with the child as best as possible to ensure they have a happy/good life.
I’m grew up live in rural America. There are absolutely no resources for children/adults with disabilities. Even for the elderly.
You can also visit Leah's website lovingyoubig.com/ to learn more about where to get support.
I am a medical student. I was looking for something to help supplement my studies. Thank you so much for sharing. You have a very precious little girl. God bless your family.
I worked residentially with a kid with cri du chat, another one with angleman syndrome, several trisomy 21 (Down syndrome), several autistics and aspergers. All in the same house unit!!! Most amazing job I had for 10 years. Taught me truck loads.
Mind Mesh you are an amazing person to do that job and to take care of those angels 👼🏻 very curageus : hardest job in the world , lots of respect from a mom with autistic son
As a person with aspergers: thank you.
This condition seems quite similar to Angelman syndrome though this girls seems more high functioning than others I have seen with the same condition
Shows how extremely important therapy is, all these kids should have right to consistent therapy to be able to live to the fullest
@@teijaflink2226 similar trades
My cousin has this syndrome. She was not walking until multiple surgeries and she was around 7 or later. Your daughter is doing incredibly well. I know how hard it can be. Keep pushing and encouraging her.
Best of luck and maybe my family will see you at the next 5P- conference.
I just want you to know that your child would not be walking if it was not for your diligence love and compassion for your daughter. So beautiful that she has two parents totally dedicated to her well-being. Most children are lucky to even have one parent that cares so much about their child and take so much time to do everything possible to make their life better. And this beautiful girl has two parents completely dedicated to her🤗 God bless you both!!🤍🤍🤍 Your daughter's future will be bright thanks to your perfect love. ✨
Thank you for your beautiful comment!
I watched their video and totally agree with your comments. I felt and could see, the total love and dedication to their beautiful daughter from her beautiful parents...may god continue to bless you all...
So close to home. My son was diagnosed with Cri du chat in 2004 . God has truly blessed us with an AMAZING medical team at the Kennedy Center, Montefiore and Blytedale. They're times when we felt lost and discouraged because his condition was so rare which makes it very hard to get services but through it all, they're some medical professionals like Dr. Lisa Schulman🙏, Tammy Fried and Nicole Martinee who made sure our son was not just a number. They exhaust every option possible to provide my son with the services he needed to have a functioning life today at 15 years of age. Today Brandon walks, run, communicate his needs and a lend the length of his tongue if need be😂.
Thanks for sharing your story.
God bless you and your family🙏💞
💖💞💖
Thank you for creating this video. I thought Cri Du Chat was just a high pitched cry or so, but this changed my mind completely and now I understand.
as far as I know all children including me with cri du chat are born like cry like a cat.
its kind of the thing with cri du chat.
we lose the cat cry a few months afterwards and it is all different for every person
Every child deserves parents like you 2. Your daughter is a beautiful reflection of your love & dedication to making her world a better place. It’s amazing to see how far she’s come. ❤
I worked as a direct therapy service provider for people with developmental disabilities for many years, and as an administrator in a State/federally funded Early Intervention Program with an emphasis on support for families and community-based resources. I moved into Older Adult services at a point- different and similar, too. Now retired, and so delighted to hear your daughter is thriving and your family's story and promotion of Early Intervention resources to others.
What a remarkable story! The parents advocated for her and reaped the benefits. May all involved be blessed this holiday season!
She's absolutely gorgeous.
Parents are very patient and strong. These conditions would be very tough for them.
They are saying Chrisean Rock & Blueface’s baby has this syndrome. Very sad 😢
I just came from a video with him making cat like sounds. I hope he is able to progress like this wonderful child.
@@NomfundoV8Chrisean is failing to get him any help
@@jenniferatkins3303don’t worry too much if and when baby gets diagnosed Chrisean Rock will be a mama bear to his needs plus she will definitely have a army supporters to help.
I pray she seek help get him diagnosed the sooner the better 🙏🏾
❤❤❤❤❤❤I pray he doesn't have this 😢❤🙏@@NomfundoV8
I remember when my little sister with cri du chat learned to walk, it took a long time and she worked soooo hard and I am so proud, like the first time she said “I love you” she was like 9 or 10 years old I cried so hard. I remember the first time she said mom and my mom sobbed. My sister loves to paint and she loves to draw, her drawing has improved so much in the past year she can draw faces now
we have a little boy - with CDC - and he looks like your "baby" - really -
we have also experienced so many positive surprises - it is very exhausting, but also such a great feeling.
Our little one can now also speak and at school he learns simple arithmetic and writing - so great!
a lot greetings from Dresden / Germany
God bless him
Look at these mighty people. Their love is so strong!! They see the worth in this magnificent child. What a gift: they shared their story with the world.
It's nice this child is functioning pretty well. The cases I saw as a nurse were very severely affected. Until I saw this video, I never knew they could be anything but wheelchair bound, unable to communicate, on a feeding tube etc.
I have cri du chat
Bless this beautiful child and her loving, dedicated parents, as well as determined therapists and other professionals. Great!
People like these parents, through having to face such tough challenges because of having to raise a developmentally delayed child, find such resources of strength, love, compassion and tenacity within themselves. In order to allow their kid to reach their full potential, they've had to persist and be determined, day after day, week after week, for years without losing hope, just so that their child could eventually reach the milestone of walking, which most other parents can take for granted will happen when their child is around a year old. I do have great admiration for them. The fact that they dug even deeper, and raised money to help other children receive the care that they needed too, is absolutely remarkable and is very worthy of admiration as well. Their little girl gets a lot of enjoyment out of life and can appreciate all the beautiful things that our world has to offer, which of course is very gratifying to see.
I have an enormous soft spot for kids. I'm sitting here trying not to cry as I watch this sweet little baby achieve so much...
I teach special education at a low income elementary school in Texas. The majority of our students get an hour of speech or OT therapy or less per month that’s provided by the school district. The case loads our therapists have is ridiculous. Most of our kids are on a waitlist for speech or other therapy outside of school. We never stop trying to teach our students new skills or give up hope. Sadly, in many cases how far a child progresses depends on how much money the families have to pay for outside therapy. It’s truly heartbreaking.
Thank you for sharing that! I agree. That’s why we are trying to raise awareness and do more advocacy work on a federal level
We need more support for parents to support their children at home. Therapists can provide great resources but too many sessions can be exhausting for the child.
@@windybeach2184 I absolutely agree. Many of our daily challenges in our classrooms could be minimized if parents were more aware and involved. It’s important to advocate for your child. Many of my parents believe teachers and therapists can work magic without them putting in any work at home. If I had one dream to come true it would be for parents to be forced to take educational classes on how to parent and navigate life with a special needs child if their child receives special education services. Sadly, many of my parents believe their child isn’t capable of learning and knowing how to follow rules because of their disability so they put little to no effort into teaching them. It’s sad all around. 😔
Your school is out of compliance with IDEIA. I wonder if the state is complying with providing required state funding.
@@audreyrasmussonmost low income schools aren’t in compliance. But the thing is, if they don’t have the resources (staff etc.), they can’t really do anything. Parents can technically sue the district and make the district pay for an alternative appropriate placement in a private school of some kind, but most parents aren’t going to do that due to the money and time involved, or they just don’t know it’s an option
My Granddaughter has cri du chat. She was diagnosed at about 3 weeks old. She's now. We're in Australia and we couldn't even find a doctor that has ever seen a cdc child. She started walking independently at around 3 yo. My daughter has a blog called the honest pirate, melanie stephens. I know she has people from all over the world reading it, some are parents of cdc kids. Worth checking out.
who diagnosed her?
This changes people in so many ways. Great effort and sacrifice of such parents and unconditional love for these amazing children is a testament to so many things. 💜
Came across this video whislt studying for my Psychology degree. Thank you for sharing your inspiring story! God Bless your wonderful family.
We have a little boy with cri du chat, i'd just like to say thank you for this video. She's absolutely magical :) our boy makes the same faces and laughs sound identical. much love x (edited for the spelling police)
*identical
My son has not been diagnosed with this exact syndrome, but he is autistic with a profound speech delay and so much of what these parents had to say could have come straight from my and my husband’s mouths. The immeasurable joy and love, but then there’s the hard parts too. I really appreciate their honesty, every child is different, but to hear from parents I can really relate to is so valuable.
❤️ warming, * I have a daughter born with Cru du chat .she's now 23 ** always so happy ..yes theirs struggles, but we all got em.. honestly she seems so happy * always .God 🙏 has all of us Truly..she had early schooling threw our local regional center, at 8 month to 3 years then went to special needs school from 3 to 18 , and she also young adult program from 19 to 21, after 18 years of school .* One morning she woke up and refused to go **! Lol so I'm giving her a year break**!! Soon as covid 19 is cleared up . I will find get another program to enjoy .
Thank you for sharing your story. This little girl is a miracle! And the strength I see in your little family, encourages my heart to keep moving forward and never lose hope
How wonderful that this beautiful child has such intelligent, loving and patient parents to give her the best possible chance in life. I hope Jordan is doing well 5 years on.
I wish my parents can see this... see how hard it is to be a parent.. All the love to them, Jordan and the generous people who has helped them.
Thank you for this documentary and especially the comments about the therapists. My son has Agenesis of the Corpus Callosum, another condition with wildly differing prognoses, and thinking back to the therapists who worked with him in Early Intervention, we were so blessed... The memory of their hard work & kindness makes me tear up.
Jordan is beautiful!!! She looks just like her dad. God bless your beautiful family.
what a gorgeous gorgeous little girl. how joyful and intelligent she is. I truely admire you both as parents, getting to grips with a child with an inpairment of any kind is so difficult I know. I grieve for the energy I don't have anymore. my mind is like a big cotton wool ball. please take care of yourselves along the way, take time to reconnect with each other and do thinngs that you enjoy together. it is so so important.
You two are amazing parents! She will reach the stars with you both building her up, and you’ve gotten her every help in every way. Wish you all many many blessings! She is a beautiful little girl.
Thanks for sharing this, I’d never heard of it !
I thank God u have such amazing resources. And such a beautiful child. So cute😍
Such dedicated, loving parents.
Not many would be able to do what u guys are doing.
God bless u💜
Thank you so much for allowing us to come into your home and see your beautiful family. May the lord bless you guys!
Wow, what amazing parents. Their dedication and love obviously made all the difference. A beautiful family.
Thank you so much!
You both are absolutely amazing parents. Iam a mother myself can't imagine how much heart it takes to accept that, your child is different from others yet believe in the fact that different is beautiful. Thank you so much for sharing. Iam an early years teacher and studying further and this will definitely be going into my research into different areas of early development. ❤️❤️❤️❤️❤️❤️❤️❤️
Thsnk yiu so much for sharing your journey. I had never heard of Cru Du Chat… Your little daughter is absolutely adorable…She has her Daddy’s curly hair… it is so clear that this precious child has briught joy to yiur lives. She is so,lucky to have so much therapy..and living, intelligent parents. Watching her learn, walk, and communicate made me smile… God bless you all. ❤❤❤
Such a beautiful child. A smile can communicate a thousand words. Thanks
Absolutely amazing video. Thanks for sharing. I'm doing a presentation on cri du chat for my peds class tomorrow and watching this gave me so much more insight.
Wonderful. Hope you get an A!
such a beautiful documentary. the happiness in the eyes of the mother, Leah, when she talks about the day Jordan walks the first time...
Please dont be discouraged! She is doing great! I know nothi ng about this condition but my grandson is 4 and a half and is in speech therapy. He doesnt have any specific conditions just needs help with speech and from what ive seen with him and your daughter she is very smart and doing very good for her age!!
My grandson is non verbal, on the spectrum, and was so like this. They had early intervention and such great help and hundreds of therapies. But I have never heard of this.
i don’t know how parents of children with these kinds of problems do it. i can’t imagine the kind of love, emotional trauma, and disappointments they must deal with. they are totally amazing and wonderful people. i have so much respect and emotional support towards them. 🌹🌱
Thank you for your response! I wrote a book, Loving You Big, about our experience to talk about this more! Spread the word to change the narrative about how individuals with disabilities are seen in society.
This is really well done! Kiddos with this and other genetic disorders are so sweet. While attending a program for blind teenagers, I worked at a summer camp for kids with various disorders. They are some of the best folks I had the privilege of meeting.
I was studying genetics and discovered about cridu-chat syndrome ( deletion of short arm of chromosome 5).....she's so beautiful...lots of love from india..
You are amazing parents, just incredible.
Precious parents!! You have made life happen for you and your dear daughter! Hugs for you all…
Incredible story, I had never heard of this genetic disorder, thank you for sharing your story.
Thank you so very much for sharing with us your daughter’s story. I wish you all the best. ❤
lots of love for her.. She will grow strong and beautiful InshaAllah..
Your little girl is so sweet. You have done a wonderful job caring for her. I wish you the best of luck moving forward. May she have a bright future.
Thank you for sharing your experience with your loving child.
This little girl is absolutely precious! I pray she keeps thriving.
I feel for this couple, knowing that their daughter will be needing them well into adulthood.
This is a truly inspiring and heartwarming story. Seeing people work together like this is so wonderful. This is how we make things happen ... make things better. This is the true power of people working together.
We are getting so many views and comments recently on the video. Would you mind sharing how you came to find the film on UA-cam? Thanks!
@@emilydombroffvideos I can’t speak for lifecloud, but it kind of randomly showed up on my feed. You have an amazing family, thank you for sharing!
@@emilydombroffvideos A youtube suggested video. I had never heard of this before and I was interested to find out about it.
She's precious
WOW i m so happy for them that she is walking!! Love and prayers to this beautiful family
Good work with this little girl ! I have seen cri du chat kids who were not doing any of this, but they were abandoned by parents, so no one to help them. It makes the difference. Hi from France.
She is such a precious little girl! God bless you.
So thankful that parents are trying to help children who have learning delays when it comes to movement. One of our grand twins (fraternal) has had Low Muscle Tone and did not walk until over 2 years old. Yes, he is walking and he has had physical therapy and now they are working with speech therapy. Our son and daughter-in-law are helping with both speech and sign language as one of the twins was born with low muscle tone whereas the other twin has no struggles.
I had some developmental difficulties for which I was mocked by my parents and siblings, I was called “defective”. Calling a name was so much easier than trying to make an effort. Our one son who had some learning delays, I took him everywhere, got him in Head Start and worked with a nutritionist. I never once told anyone he was “defective”. I even was being told this as a teenager too. I have a high IQ, that I was ever treated this way is very hurtful.
My brother heard these words too and though it was about him, he was born with an inguinal hernia and he committed suicide when I was 22, just before my birthday. He was a very talented and bright person.
I have self-worth issues to this day because of the heartless upbringing I endured. Love your child and get them all the help they need. They are worth it.
Was studying and came across this term, thank you so much for this wonderful, touching video ♥
What a beautiful family! Thank you for sharing your story! ❤
What a sweet family! Sending love and prayers for continued success.💕
You guys are amazing parents. Your child seems happy healthy and well loved. So precious. This video was uploaded 7years ago please could you give an update of her development to date. I appreciate you sharing this.
Thank you for sharing your story about your child.Thank god your daughter was blessed to have you guys as parents.
wow those parents👏🏻 also such a lovely child!
So many challenges we have never been made aware of. Thank goodness there are great support providers to help us in need. Years ago these precious children would have been locked away in an institution. We should never think of what they can't do but rather on what they can do and overcome. These parents are blessed and challenged but our challenged gifts to us enrich our lives in ways you couldn't imagine. It is not easy or always pleasant dealing with some of the challenges presented but nothing in life is truly easy and filled with roses.
Excellent documentary. The parents & medical team are tremendously in
Wonderful parents, and also well done kid!! May God bless you all.
I am so happy for you all! God has blessed you with this wonderful child!
This is why we need universal healthcare so all families so children can get therapy
A friend had a baby born with this in 1985. He is still alive.
What a beautiful family and what amazing parents that little girl has. ❤
What a beautiful story. Inspiring. What dedicated and loving parents.
As a parent with a daughter who has cdc very nice video. Makes me smile.
I have cri du chat as well
That beautiful smile says a lot about who she is, and who she will be.
This little angel should be about 7 now . I wonder how they are all doing ❤️ God bless this family always
Thank you for watching our film! Jordan is much older than that! She was born in 2011. Visit Leah's website lovingyoubig.com/ to learn more about how the story continued!
restore my faith in humanity
She’ so adorable!! Thank you so much for sharing this great video!
May God bless your beautiful family!
Wow, Jordan looks great and seems really high functioning for Cri Du Chat.
She’s great!
I'd love to see an update on your beautiful little girl! 💕
Thank God you were diligent with Jordan’s PT. Awesome documentary, but you guys are awesome parents so that makes all the difference.
Finding this video in 2022 and Mr. Moore actually works at the high school I went to, the creator of this documentary used to be the video teacher. As someone who likes to watch medical documentaries, it’s cool to see how someone in my community has created this to spread awareness
hi! This is so cool! We have been getting a lot of traffic and comments on the video the past week. Can I ask how you came across it?
@@emilydombroffvideos not OP but it just popped up in my feed today. I don’t know why. I follow littlehooves, Nate the Hoof guy, and Sheepishly Me, Anglican and Catholic channels, and a capella singers. Lovely video and so helpful, I’m sure, to parents facing the challenges of cri du chat. Best wishes!
Thank you for posting. I knew nothing about this.
Thank you for watching! You can learn more about our family by reading Loving You Big
What a beautiful family in so many ways.
Never heard it.. until I researched it for my medical exams.. and laaaa.. came across this wonderful documentary.. i understood it so well.. not because they described it very well but because it made me understand and feel the pain and happiness of the parents... Thnq so much for this wonderful video.... hope lil Jordan is doing well
What a beautiful child and family. All the best to you.
Awesome story with wonderful parents were completely determined to help their beautiful daughter. God bless them all. ❤️
big thanx for sharing this,, so inspired and helpful as a physiotherapy student
Thank you for teaching us.
You would know until she's older... She seems absolutely like any other kid.
wow, you are amazing parents!! She is wonderful!