i am sorry for your loss. ive lost two brothers. they were adults but its still so hard. in between losing them. my husband died from heart failure at 43. but im ok. i know they're at peace.
I worked with people dying of AIDS trying to take good enough care of themselves until there was a cure...and then there was the right combination of medication and people stopped dying. Don't give up hope that these kids will live long enough to find a treatment that works! Lots of prayers to you all.
Absolutely. I can't even imagine the level of stress and heartbreak worry these parents are under. But Yes, there IS Hope. We are progressing in leaps and bounds medically speaking!! A break-through medication could be just around the next corner!💜💜💜
My grandson was just diagnosed with MPS1 Hurlers. Your video was very helpful and gave me some hope. Bless your beautiful family. My heart goes out to you.
@@tamisims6780 Where are you located? we are in Canada and don't know any other families near us going through this. My heart goes out to your family. We have been looking for a bone marrow donor for our grandson but no matches yet.
@@housewren2218 hoping for a donor match for your grandson. To my understanding my gsons big sister is a match i guess we are very lucky. Bless your family and i keep him in my thoughts daily to find the match that he needs.
Omg. My daughter has EDS and that is frightening enough. My heart and prayers are with you and a cure through bone marrow transplant. I know I don’t have a cure but God bless you.
Cute kids ! These parents seem so strong and in control and well informed ! I pray this family does well and that their children are healed by the stripes of Jesus and that they all live to a ripe old age . ❤🙏 Amen .
I agree. Those kids are really cute though. I loved watching the little boy sleeping in mama's arms while his sister is quietly playing with daddy. So adorable.
They are 4 and 2 they are not in fear they are children who are super young that don't understand fear. You beíng an adult are the one who is afraid. The hey don't have to quiet themselves down speaking around THEIR CHILDREN. How else are we they supposed to act around THEIR CHILDREN to make it better for adults? I find your comment not very nice. They have children who are actively dying everyday. I think they're doing all they are supposed to ok be doing. And they are doing a video of for other parents with children who are dying and I'm sure they don't make ita habit to talk so frank around their children to upset them. As you can see it it's not their own you tube channel either so they are doing it for someone else in hopes of spreading awareness of their children's diagnosis.
@@carrieanncancino5118 babies understand fear, at 2 most certainly. Of course they can talk about it, but maybe when the kids are napping. I am speaking from my personal childhood experience and I know that the way I was spoken about as a child affected my relationship with my parents.
@@paxhumana2015 So very reactive..Reactive... Children do understand..when being talked about...with all their treatments..I am certain they know they have a health problem, while not fully understood by them...These parents have in daily care explained age appropriate ways about these things..one day at a time.. God ❤️ Bkess All
Possa la DIVINA MISERICORDIA ILLUMINARE I MEDICI,E suggerire come aiutarvi!RENDERE LA VOSTRA VITA MENO DOLOROSA!Ma sono certa che voi vivete questa situazione SERENAMENTE!Perche'siete RICCHI DELLA PRESENZA DELLE VOSTRE CREATURE MERAVIGLIOSE !SENZA DI LORO NON SARESTE FELICI,SONO LA VOSTRA GIOIA LA VOSTRA RICCHEZZA!
To the parents i cannot begin to imagine the trauma that you go through on a daily basis, I think God put these precious children with the right parents because they needed strong motivated parents to take the best care of them .though their time on earth maybe short , the love and care will be with them for ever, make every day the happest you can make it for all of you. Never ever think "have we done enough " because you are doing all you can and your children will know this. If the time comes when they have to go , the best thing you can do is live your best life because they will be fixed in heaven and won't want to spend a second seeing you sad. I wish you all the look in the world, sending a HUGE hug and prayers to your whole family ❤💜💝
I’m sure if they manage to see your comment, it will help them. I genuinely believe that as a person who got sick as a child, and is still affected today, I know why God made me my mother’s daughter xx
@@chronicallyella1191 I too was sick as a child and my mum was amazing, still to this day when ever I want to give up I hear her voice " get up move forward , the only time you can say you have failed is when you get knocked over and stay down. The fighters are the ones that no matter what they get up , even the worst days I think , " I don't want to get up , I have had enough , it still makes me fight. If I live to be a hundred I will be somewhere fighting xx
I have a line, not for this reason but I’ve had 6 in the past 4 years, 3 in my arms, and 3 of the chest ones she is talking about. It is a bit annoying having to put extra dressings over it every time I want to shower and I’ve always been old enough to understand so I really understand and have sympathy for these parents because I don’t know how you would try explain all of the rules that come with the lines to a 3 or 4 year old, especially telling them they can’t pull it or mess around with it. Sending love xx
If it means ending the disorder once and for all, then having as many case studies and patients can lead to where things went wrong genetically. We have already mapped the entire human genome, to say nothing about the genomes of many other lifeforms, so if people know where exactly that this genetic issue begins, then they can essentially eradicate it from humankind.
First of all you guys are very strong and brave to walk this path, but I do not fully understand the decision to have a second child. This disease is quite horrible and it involves a lot of medical care for this kids. They didn't have any saying if they are willing to fight this battle. I fully understand that the first child affected by this genetic mutation was not foreseeable and there was no choice given, but with the second child this parents had the full knowledge about the risks of having an other baby affected by hurler syndrome. Obviously everyone is entitled to have their own opinion and can go with their own decisions, however I kind of find it a bit selfish to take this risk. This children are going through so much medically and quite frankly treatments for hurler's often involves painful and very uncomfortable procedures. Why putting a second child through all that if it could have been avoided? Just my opinion, I'm sorry in advance if I hurt anyone's feelings by stating my opinion.
Timea with genetic disorders there is usually a 1 in 4 chance with each child. So they might have felt it was safe. I know parents with different genetic disorders that got lucky with only 1 in four affected. Unfortunately these children have a very difficult road to follow.
@@vixxcottage even the children who are outwardly unaffected probably still carry the gene meaning if they had children they could also be affected. I also find this very selfish to knowingly bring a child into this world knowing there is a 25% chance they could have a horrible, painful, short life, full of surgeries and pain. 25% if a large risk to take with something so serious and fatal. This is no other word but WRONG for this. That child had no say and the decision was made for him, but HE suffers for it.
I can't relate with having Hurler's disease. I have different disorders of my own. It is hard to live with mental health problems as well as physical. But I'm glad that my mom and dad still love me despite or because of our problems that we didn't ask for. There is nothing selfish about loving children who have disabilities. Love may not be able to magically take our problems away but it does get easier dealing with it as long as you know that you are not dealing with it alone. We have worth. We are valued. Nothing will change that.
What beautiful lil Angels of God! For the Lord there is no impossible! He has the Last word! Bring your Prayer Warriors for a chain of prayers. Bring your children to the Cross! They will find and receive healing! In Jesus sacred and Blessed name, Amen!🙏🙏🙏
To bring not one ,but two babies into this world just to suffer is cruel. If first child was diagnosed so early they knew another baby would most likely be born with it. Because hurlers is inherited, both parents must carry it. Just because you want children? That's selfish. I pray they don't bring more babies into this world to suffer. Adoption?
Yes, exactly. Sick, selfish, sadistic people. Narcissistic, too, as they are lapping up all the attention garnered by their children's illness; if it weren't a genetic disease I would think they had Munchausen syndrome by proxy.
If you saw your daughter go through this and all the suffering why in the world would you have another baby to put them through this pain? I won’t follow you or watch again if you guys did this on purpose. It’s like child abuse to me. No matter how bad you wanted another child even for the bone marrow I wouldn’t have done this to another child. Now your online getting sympathy and help for something you chose is even worse. I’m so sorry for those kids.
This is obviously a genetic condition, although you don't go over this in the video. I'm not try to judge anyone, but after you daughter was born and you knew you obviously could pass the horrible condition down to your child, why did you go ahead and have another child. It seems kind of selfish when there are so many more options out there to build a family. You knowingly brought a child into the world to live a very short time and a life of illness, needles, hospital stays, pain, confinement and the list goes on. This isn't fair to them. I am sorry they were afflicted with this and I can understand the first child, you probably didn't know you had this genetic condition, but the 2nd child was deliberate from what I can see. Why????
Like my sister..she passes a gen on the female kids(mytohondrial rare genetic disease)her daughter was died when she was 3.years old and dr told her "look you have a two healthy sons dont get pregnat anymore because its a 99 chance to happens again.And she got pregnat with female child and she also died.Sorry for my bad writing im not from USA.It makes me sad
@@tirzahmyers3392 uhh very unlikely in this day and age if you are responsible and use contraceptives that are 99.9% effective, and use them correctly. Tbh when you're talking about syndromes this serious, there's no room for "oops" and you make sure by getting yourself or your husband sterilized for 100% effectiveness.
@@GroundhogBaby maybe they had a procedure planned, maybe even scheduled, and then found out baby #2 was on the way. My point is that we should just not judge one another when we don’t know all the details.
Why, after the 1st child with this syndrome did you parents have a 2nd. This is a genetic issue. Meanwhile, quality of life for a child having 1 surgery after another, not to mention pain... trigger- finger, back surgeries... Does insurance pay for bone marrow transplants, daily blood draws, perfusion surgery? These people must be rich - insurance would refuse to pay.
So these people had a baby, found out it's got a terrible genetic disease...and then went ahead and had another baby, knowing that it could have the same genetic disease?! That's sick and cruel. Screw these people for bringing children into the world, knowing they are going to suffer and die. These people are sadists.
My brother passed away from this genetic disorder when he was 6. Back then there were no transplants etc. Sending my love.
I'm sorry for your loss.
i am sorry for your loss. ive lost two brothers. they were adults but its still so hard. in between losing them. my husband died from heart failure at 43. but im ok. i know they're at peace.
@@kdt789 im sorry for your losses, thankyou for sharing with me. May they all rest in peace.
So sorry for your loss x
Sorry to hear that ,must have been so hard at a young age. Stay Strong
I worked with people dying of AIDS trying to take good enough care of themselves until there was a cure...and then there was the right combination of medication and people stopped dying. Don't give up hope that these kids will live long enough to find a treatment that works! Lots of prayers to you all.
I’m sure you made a big difference in many peoples lives , Thankyou x
Absolutely. I can't even imagine the level of stress and heartbreak worry these parents are under. But Yes, there IS Hope. We are progressing in leaps and bounds medically speaking!! A break-through medication could be just around the next corner!💜💜💜
Cord blood can reverse the symptoms amd replace the enzymes lost. 99% effective.
My grandson was just diagnosed with MPS1 Hurlers. Your video was very helpful and gave me some hope. Bless your beautiful family. My heart goes out to you.
Im in your shoes my lil gson has MPSTYPE1 ALSO
@@tamisims6780 Where are you located? we are in Canada and don't know any other families near us going through this. My heart goes out to your family. We have been looking for a bone marrow donor for our grandson but no matches yet.
@Cheryl Tiede Im in boise idaho and my gson will be headed to SLC tomorrow to start testing for a match.
@@housewren2218 hoping for a donor match for your grandson. To my understanding my gsons big sister is a match i guess we are very lucky. Bless your family and i keep him in my thoughts daily to find the match that he needs.
@@tamisims6780 They found a match! He goes in for a transplant on March 11. we are so grateful to the donor!
Omg. My daughter has EDS and that is frightening enough. My heart and prayers are with you and a cure through bone marrow transplant. I know I don’t have a cure but God bless you.
Prayers🙏🏻 for new treatment,and for continued strength.
Thank you for sharing your story. God bless your children and you. You have so much to do to keep the kids doing well but you do it! 🙏🏻🙏🏻💞
God bless and protect your precious children. They are both beautiful little people. Hang in there, and keep on keeping on.
Bless your souls. All the love to you
Bless them beautiful children & the mum & dad praying and hoping the very best for them all ♥️♥️
Sending love and healing energy to all of you!
Its just amazing how much you guys have learned that you can share with others. Super cute babies!
Cute kids ! These parents seem so strong and in control and well informed ! I pray this family does well and that their children are healed by the stripes of Jesus and that they all live to a ripe old age . ❤🙏 Amen .
Absolutely x
I agree. Those kids are really cute though. I loved watching the little boy sleeping in mama's arms while his sister is quietly playing with daddy. So adorable.
Bless this family❤
I hate that those sweet babies have to go through that. They are so strong! And absolutely _beautiful._
Love. And prayers coming
She's very smart. Be sure you're not scaring her when you talk about her. Especially when you think she isn't listening xxx
They are 4 and 2 they are not in fear they are children who are super young that don't understand fear. You beíng an adult are the one who is afraid. The hey don't have to quiet themselves down speaking around THEIR CHILDREN. How else are we they supposed to act around THEIR CHILDREN to make it better for adults? I find your comment not very nice. They have children who are actively dying everyday. I think they're doing all they are supposed to ok be doing. And they are doing a video of for other parents with children who are dying and I'm sure they don't make ita habit to talk so frank around their children to upset them. As you can see it it's not their own you tube channel either so they are doing it for someone else in hopes of spreading awareness of their children's diagnosis.
@@carrieanncancino5118 babies understand fear, at 2 most certainly.
Of course they can talk about it, but maybe when the kids are napping. I am speaking from my personal childhood experience and I know that the way I was spoken about as a child affected my relationship with my parents.
@@biddiemutter3481 , et al, then you lot need to fix your own problems instead of spreading yours elsewhere online.
@@paxhumana2015
So very reactive..Reactive...
Children do understand..when being talked about...with all their treatments..I am certain they know they have a health problem, while not fully understood by them...These parents have in daily care explained age appropriate ways about these things..one day at a time..
God ❤️ Bkess All
Love, hugs and prayers to you and your beautiful family♥️🙏🏼❣️❣️
Possa la DIVINA MISERICORDIA ILLUMINARE I MEDICI,E suggerire come aiutarvi!RENDERE LA VOSTRA VITA MENO DOLOROSA!Ma sono certa che voi vivete questa situazione SERENAMENTE!Perche'siete RICCHI DELLA PRESENZA DELLE VOSTRE CREATURE MERAVIGLIOSE !SENZA DI LORO NON SARESTE FELICI,SONO LA VOSTRA GIOIA LA VOSTRA RICCHEZZA!
These two darlings are here for a reason and their suffering and their path no matter how short is not in vain. I bow my head in reverence.
sending prayers....i admire your strength.....
Big hugs to you all ❤️❤️❤️❤️
Bless you all.
Awww they're adorable🙌😀😁😍🥰💟💙🙏🤗😘
My heart goes out to them💔🥺😔
Your a beautiful strong family. I wish you all the best.
I am keeping you all in prayer!!!
Many positive blessing's to your children🙏🏼🙌🏼👑💞
May God Bless you! Great parents!❤️
God strength be with all of you!
Warm hugs from katrinka in the San Francisco Bay Area
all the love to you
To the parents i cannot begin to imagine the trauma that you go through on a daily basis, I think God put these precious children with the right parents because they needed strong motivated parents to take the best care of them .though their time on earth maybe short , the love and care will be with them for ever, make every day the happest you can make it for all of you. Never ever think "have we done enough " because you are doing all you can and your children will know this. If the time comes when they have to go , the best thing you can do is live your best life because they will be fixed in heaven and won't want to spend a second seeing you sad. I wish you all the look in the world, sending a HUGE hug and prayers to your whole family ❤💜💝
I’m sure if they manage to see your comment, it will help them. I genuinely believe that as a person who got sick as a child, and is still affected today, I know why God made me my mother’s daughter xx
@@chronicallyella1191 I too was sick as a child and my mum was amazing, still to this day when ever I want to give up I hear her voice " get up move forward , the only time you can say you have failed is when you get knocked over and stay down. The fighters are the ones that no matter what they get up , even the worst days I think , " I don't want to get up , I have had enough , it still makes me fight. If I live to be a hundred I will be somewhere fighting xx
@@tracywaring3769 I hope you are fighting at 100 some day. Thank you for sharing your story xxx
Praying for all!♥️
🙏💕may god bless an keep your family
Oh my goodness so sad. I pray in the name of JESUS these babies will be healed. Bless this family ❤ ❤
Ooo He is so Cute 🥰 ..God bless family, stray stong 🙏
I have a line, not for this reason but I’ve had 6 in the past 4 years, 3 in my arms, and 3 of the chest ones she is talking about. It is a bit annoying having to put extra dressings over it every time I want to shower and I’ve always been old enough to understand so I really understand and have sympathy for these parents because I don’t know how you would try explain all of the rules that come with the lines to a 3 or 4 year old, especially telling them they can’t pull it or mess around with it. Sending love xx
God Bless!
God bless your family.
My heart goes out to this family. You all are so strong and brave. May the Almighty God bless these children with a long, healthy and happy life.
God Bless you akk.
I don't agree with having another child with this genetic disorder..Not fair to him.I think you are good parents ,don't get me wrong..
If it means ending the disorder once and for all, then having as many case studies and patients can lead to where things went wrong genetically. We have already mapped the entire human genome, to say nothing about the genomes of many other lifeforms, so if people know where exactly that this genetic issue begins, then they can essentially eradicate it from humankind.
I agree, it sounds like the kids go through a lot of pain😣
My sister had hurlers xx
Are their any updates on this family
The Ladd Family, das ist ihr you tube channel
This was 3 yrs ago is there any updates for today
First of all you guys are very strong and brave to walk this path, but I do not fully understand the decision to have a second child. This disease is quite horrible and it involves a lot of medical care for this kids. They didn't have any saying if they are willing to fight this battle. I fully understand that the first child affected by this genetic mutation was not foreseeable and there was no choice given, but with the second child this parents had the full knowledge about the risks of having an other baby affected by hurler syndrome. Obviously everyone is entitled to have their own opinion and can go with their own decisions, however I kind of find it a bit selfish to take this risk. This children are going through so much medically and quite frankly treatments for hurler's often involves painful and very uncomfortable procedures. Why putting a second child through all that if it could have been avoided? Just my opinion, I'm sorry in advance if I hurt anyone's feelings by stating my opinion.
It’s weird but I wondered the same thing. Why?
Timea with genetic disorders there is usually a 1 in 4 chance with each child. So they might have felt it was safe. I know parents with different genetic disorders that got lucky with only 1 in four affected. Unfortunately these children have a very difficult road to follow.
@@vixxcottage even the children who are outwardly unaffected probably still carry the gene meaning if they had children they could also be affected. I also find this very selfish to knowingly bring a child into this world knowing there is a 25% chance they could have a horrible, painful, short life, full of surgeries and pain. 25% if a large risk to take with something so serious and fatal. This is no other word but WRONG for this. That child had no say and the decision was made for him, but HE suffers for it.
@@GroundhogBaby I have verbalized that b4 in a medical professional atmosphere and told that was Nazi thinking. Would I do it. Definitely not.
I can't relate with having Hurler's disease. I have different disorders of my own. It is hard to live with mental health problems as well as physical. But I'm glad that my mom and dad still love me despite or because of our problems that we didn't ask for. There is nothing selfish about loving children who have disabilities. Love may not be able to magically take our problems away but it does get easier dealing with it as long as you know that you are not dealing with it alone. We have worth. We are valued. Nothing will change that.
Note to Filming team... Perhaps the chat part could be done out of earshot of kids
Numbing cream is the best thing around for ports.
Keep faith Miracle happens.... They are so pPrecious.
How do you do it with work and bills siblings
Hi 👋 how are you doing?
Mia Moore, I agree with you.
🙏🏾♥️
Does both kids have it?
There's also stem cell transplants for Hurler.
What beautiful lil Angels of God! For the Lord there is no impossible! He has the Last word! Bring your Prayer Warriors for a chain of prayers. Bring your children to the Cross! They will find and receive healing! In Jesus sacred and Blessed name, Amen!🙏🙏🙏
BREAK THROUGH AND DELIVERANCE: I AM PRAYING WITH U ALL IN JESUS NAME AMEN. GOD IS A HEALER.
If I had a child with this, and any other children would have a 25% chance I would have myself sterilized rather than subject another child to this.
Doesn't it have sth in common with parasites?
What is the diagnosis?
Hurler syndrome
Hurler Syndrome.
Did you even see the title of this video or watched it??? Kind of a weird question.
Hows that a weird question?
Hurler syndrome
Did you get tested? Will all future children have the disease?
To bring not one ,but two babies into this world just to suffer is cruel. If first child was diagnosed so early they knew another baby would most likely be born with it. Because hurlers is inherited, both parents must carry it. Just because you want children? That's selfish. I pray they don't bring more babies into this world to suffer. Adoption?
My thoughts exactly. This is horrible
Yes, exactly.
Sick, selfish, sadistic people.
Narcissistic, too, as they are lapping up all the attention garnered by their children's illness; if it weren't a genetic disease I would think they had Munchausen syndrome by proxy.
لو يعملو ترجمه 😥للعربيه
Love and prayers from Australia.
If you saw your daughter go through this and all the suffering why in the world would you have another baby to put them through this pain? I won’t follow you or watch again if you guys did this on purpose. It’s like child abuse to me. No matter how bad you wanted another child even for the bone marrow I wouldn’t have done this to another child. Now your online getting sympathy and help for something you chose is even worse. I’m so sorry for those kids.
Oh shut up
Dear Lord Heal Your Children And Comfort All Who Love Them In Jesus Christ Name Amen
Don't have anymore children.
This is obviously a genetic condition, although you don't go over this in the video. I'm not try to judge anyone, but after you daughter was born and you knew you obviously could pass the horrible condition down to your child, why did you go ahead and have another child. It seems kind of selfish when there are so many more options out there to build a family. You knowingly brought a child into the world to live a very short time and a life of illness, needles, hospital stays, pain, confinement and the list goes on. This isn't fair to them. I am sorry they were afflicted with this and I can understand the first child, you probably didn't know you had this genetic condition, but the 2nd child was deliberate from what I can see. Why????
Like my sister..she passes a gen on the female kids(mytohondrial rare genetic disease)her daughter was died when she was 3.years old and dr told her "look you have a two healthy sons dont get pregnat anymore because its a 99 chance to happens again.And she got pregnat with female child and she also died.Sorry for my bad writing im not from USA.It makes me sad
Maybe he was an oops. A surprise. You can get pregnant even when using contraception. You don’t know all the info
@@tirzahmyers3392 uhh very unlikely in this day and age if you are responsible and use contraceptives that are 99.9% effective, and use them correctly. Tbh when you're talking about syndromes this serious, there's no room for "oops" and you make sure by getting yourself or your husband sterilized for 100% effectiveness.
@@GroundhogBaby maybe they had a procedure planned, maybe even scheduled, and then found out baby #2 was on the way. My point is that we should just not judge one another when we don’t know all the details.
Well thanks for being the condemer, judge and jury.
You are not going to put a little person, though that. That is terrible.
Please dont say you will never have grandkids ! Later on u might decide to adopt. When that child grows up and has babies, there ya go ! Grandkids !!
Why, after the 1st child with this syndrome did you parents have a 2nd. This is a genetic issue. Meanwhile, quality of life for a child having 1 surgery after another, not to mention pain... trigger- finger, back surgeries... Does insurance pay for bone marrow transplants, daily blood draws, perfusion surgery? These people must be rich - insurance would refuse to pay.
So these people had a baby, found out it's got a terrible genetic disease...and then went ahead and had another baby, knowing that it could have the same genetic disease?! That's sick and cruel. Screw these people for bringing children into the world, knowing they are going to suffer and die. These people are sadists.
If there is a God that can do this to children it is either totally without mind or feeling or a monster.