Family works to raise awareness of rare Sanfilippo syndrome after son's diagnosis
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- Опубліковано 20 гру 2022
- A Metro Detroit couple noticed that one of their twin boys wasn't advancing as much as his brother. After some research and raising concerns to doctors repeatedly, he finally underwent genetic testing and was diagnosed with Sanfilippo syndrome, a neurodegenerative genetic disorder.
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all my love goes to this family. I pray he gets better. MY GOD BLESS HIM BLESS THIS CHILD BLESS HIS PARENTS AND TWIN BROTHER
All my love goes out to all the parents and there courageous beautiful children.
So sad, I hope research improves, and that they can enjoy as many years as much as possible
Dios les bendiga a esta y muchas familias que estamos viviendo en este mundo con un niño especial.
I just don’t understand why they didn’t do genetic testing from the beginning. Doctors like to go around and around about things sometimes. As a mom I have learned to push hard on my daughters doctors whenever I notice something not right, I know they don’t like it but I have to advocate for her.
Many parents too can be tested to see if they're carriers for things and choose not to which to me makes them murderers. And not all states do complete child screening but as a potential parent, u need to think like one before your kid is born so u do what u need to do regardless of inconvenience or money to take care of your child
genetic testing is EXPENSIVE. you sound like the kind of person who would demand everyone get PET scans once a month to check for cancer.
You are right but we are aware of this kind problems we only know about brain development is normal we continue that baby.not only us but the doctors also don't aware of this we going for all the best hospitals in our city they all say it's a autism,adhd,delay development.and they blame the mother's you are not caring your kid,you give mobile to your kid.thats why this happened.i just shout at to them iam not allowing mobile phone to my girl.they all said the same things.still they are not aware about this disease.you are such a intelligent mom i accept.but don't stop your intelligent with your kids.if you have the time you just give awareness to rest of the world.please don't say like this kind of words .we are already in pain.we are not know this happened to our kids.
a jscreen test is only around $200 @@megsley
Thank you, @volz519. Reproductive genetic test is sometimes covered by insurance, also. Great website. Thank you, again 💙🙏💙
Hii parents.i am from india.my daughter affected this deadly disease.i never hear this type of disease before.i don't want lose my girl .can you please tell me any research is going under this disease.
It needs funding for research ,etc...
Instead of funding wars America should be funding research into saving our babies... if we can split the atom what else can we actually do and how much is hidden behind the curtain of greed
Best thing is to have GMO kids, the embryo is tested before this whole mess and only develop the perfect ones
Stupidest comment I’ve ever read. There’s no such thing as a perfect child and things can happen to anyone at any time. If you want a perfect child, do yourself a favor and don’t ever even think of having children.