Living with SETD5/Rare Genetic Syndrome
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- Опубліковано 16 вер 2024
- This video is all about Sophie (age 7) and living with her rare genetic condition called SETD5. Sophie joined our family in 2015 through an international adoption.
For more information on SETD5:
www.rarechromo...
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Our goal with this channel is to create awareness for adoption and a rare genetic condition, SETD5 as we give you a glimpse into our lives.
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Thank you so much for sharing sweet Sophie and your beautiful story. We just found out today that our 18-month-old son, Hudson, has a deletion on SETD5. Honestly, I'm not even sure that I'm wording this correctly, since this is so very new to us.
Hudson isn't yet sitting or standing, and he is very behind with his eating. He also currently only says a couple of words.
Thank you again for sharing. It is so helpful to hear others' stories and know that other families are on the same journey with us.
There’s a lot of hope. I know it feels really big right now though. 💕
Thank you for this video. Our son was just diagnosed with SETD5, it helps us understand his new situation
I’m so thankful you and Gary answered the call to adopt. What a precious gift you have in Sophie and what a precious blessing you guys are to her ❤️
Me too! Thank you!
This video has me in tears. It’s amazing what love can do! Seeing her pics from China to the ones you share here is such a dramatic difference!
Thank you!
Thank you for sharing about SETD5, I had never heard of it until your channel. Sophie is absolutely precious ❤️
When Sophie was diagnosed there were very few cases and now there are around 200 known cases. Thank you!
I am new to your channel please know I am over taken with the love you all have for your children. I was sent over to see you clean your closet but I was shown a lot of love and hope thank you for sharing your family
Thank you so much, and welcome! We actually created this channel to promote adoption and awareness of SETD5 (while just showing people a glimpse of our lives) and also to connect with other parents of children with my daughter's condition since it is so rare. We have met several people across the globe after creating this channel and we are striving to provide hope to parents and children living with SETD5. My daughter has come so far and is doing things that we were told were"impossible". She brings us all hope and joy, and we wanted to share that with others.
I am a highly functional with SETD5 syndrome and I just got my drivers license last year. I went from low to high functioning
I love Sophie’s smile and her dancing. She is a joyful little girl. Thank you for sharing her, and your family with us. 💜❤️
Thank you! She’s really a joy.
Thanks for sharing! Sophie is the cutest thing! I had never heard of this until finding your channel.
Thank you!
I'm so very happy I came across your videos when I searched a year ago i was not able to find much on the condition. My daughter, 4years only was diagnosed about year ago. I have so many questions. So glade I found you. I have only found one other person with this.
Welcome to our channel! We’ve also found very few people with SETD5.
😊 Your daughter is so precious and sweet!
I have never heard of SETD5 will keep her in prayer! She is so cute and that smile!
Thank you!
What an amazing blessing for your family and Sophie to be connected by God!
Thank you!
Sophie just warms my heart! Thank you for this informative video!
Thank you! ❤️
My little brother has just been diagnosed with SETD5 and this has really helped me understand what it is. Thank you 🙏
I’m glad the video helped you. There is a SETD5 group on Facebook that might help too. Search SETD5 Gene Mutation and it should show up.
hola acaban de diagnosticar a mi hijo con esta enfermedad tengo mucha pena e incertidumbre alguien me podría ayudar por favor no encuentro mucha información
It is the first video I have watched talking setd5 syndrom on youtube. My son has this genetic syndrom as well. He was diagnosticated at 1 year old. It is very poorly know and reported in the population so far. Thank you for this video.
You are welcome! We started our UA-cam channel to provide hope and encouragement for families living with SETD5.
My oldest son was just diagnosed with SETD5 a few months ago. Listening to you it sounds like Raine has the same type of SETD5 as Sophie. I recognize Sophie from the Facebook group photo, I'm happy to have found your channel! God sure gave us some special kiddos🥰
Yes, he did! ❤️
Hi Colleen....I was just watching your video about SETD5 and I had never heard about this until now. Sophie is a precious child and watching your recent videos I see such an improvement. Our previous Lord knew who to send her to. What a blessing you and your family have been. You have made yourself knowledgeable and have been patient and this is such a gift to Sophie. God Bless you for that. I will keep Sophie and your whole family in prayer as you take this journey our Lord has asked you to do. I enjoyed seeing the young pictures of Sophie and the one with her and Katie. Thank you for all your videos.❤️🙏
It’s a rare condition so most people haven’t. None of our doctors have ever had experience with it either-which is difficult. Thanks so much for your prayers and support! ❤️❤️❤️
My husband and nearly 10 year old daughter have just been diagnosed with SETD5. They have the same mutation as Sophie. Thank you for sharing Sophie’s story.
Thanks for watching!
A very special girl. I admire her so much.
❤️❤️❤️
After watching I really realize how much in common Downs is. We have hypertonia, dyspraxia, heart condition - Naomi had the AV canal surgery so it’s pretty much fixed. I don’t really know if the speech delay is the same.
Yes, I’ve thought that too when watching some of your videos on Naomi’s development.
Your are a great mom.
Thank you so much!
I’m so glad that you are not giving up on Sophie and are allowing her to grow and learn as God would have her to! Doctors certainly don’t know everything but our Heavenly Father is the Ultimate Physician! He very much still works miracles and can use her condition to bless many people with it! May He greatly bless you and your beautiful family!
Thank you so much! ❤️
I’m loving getting to know yalls story better. My son has global delays and was diagnosed intellectual Developmental Disorder moderate. We don’t have great health care here but are hoping to get in with a geneticist for exonerated testing and understanding how his double identical genes affect him
We are grateful have you join our UA-cam family. I hope you are able to get the testing and answers you need. ❤️
I have the same condition and I am missing one letter and I wasn’t diagnosed until age 20
GOD Blesss You and Sophie!
Thank you! God bless you! ❤️
@@simplejoyfilledliving I wish that a constantly evolving science about DNA finds the way to solve that "error" Sophy has and put the things at their right place. Nothing is impossible!
@@simplejoyfilledliving I've just received an email perhaps interesting to you. If you wish, you can register and attend the webinar free of charge and ask them about Sophy's condition. One never knows. Here is what they say about the webinar: "Since the initial sequencing of the human genome almost twenty years ago, researchers have been enticed by an explosion of DNA data. These sequences hold the promise of understanding human biology, transforming drug research and development, and curing diseases. However, the quest to generate insights from human genetics and -omics research has been full of twists, turns, and roadblocks.
Join us for a Q&A webinar event and explore DNA Unlocked, a special edition podcast series produced by The Scientist’s Creative Services team and brought to you by Amgen, a pioneer in the science of using living cells to make biologic medicines.
In this webinar event, Ingrid Rulifson from Amgen will answer questions that delve deeper into DNA Unlocked episodes 1 and 2: The Promise and Potential and Genetics vs. Biology.
webinars.the-scientist.com/dna-unlocked-qa-signup?NEWSLETTER_TS_WEBINAR-Live&_hsmi=150288705&_hsenc=p2ANqtz-_50a2XMkuQWrB_YkC4RUmmvnmoqSkqWfsqd2-R-Kw-NCyfpUmAEzE-lgWDNwdIdtNExY2YPumoxYlL0luW8TYk7VMevA&
Hey I just learned today I have a deletion of a gene which causes me to have setd5
Wow! I'm sure that is a lot to process! You may find this Facebook group helpful: facebook.com/groups/setd5families/
Thanks!
My son also has the setd5 syndrome
Blessings to you. I hope your son is doing well.
Seeing your daughter Sophie grow and develop and seeing her smile and move full of life, believe me Mrs., it helps all of us no matter how far we are across the Atlantic. God our Lord gives us a proof of his infinite mercy through the miracle of love that your family shows us. Thank you for sharing. Greetings from Spain.
Thank you so much! 💕 Spain is so beautiful. I visited there in high school and would love to visit again.