What is Sanfilippo Syndrome? One family shares their journey
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- เผยแพร่เมื่อ 27 ต.ค. 2024
- For ten months specialist after specialist would examine Jack, all the while Amber was doing her own research until she came across a mom's Instagram post about Sanfilippo syndrome. Her daughter looked just like Jack. She had really thick eyebrows, blond hair, thick lips looked just like Jack. The symptoms fit but that would be the worst-case scenario but when Jack underwent testing, she got the dreaded call. "As soon as she said, 'have you heard of Sanfilippo?' I just about fell to my knees that was probably something on my brain for like six months,” said Amber.
As a father, this broke me... Keep up the hope!
Please stop the background music!
❤Love and prayers for this wonderful family.
Hope all are happy, for this family, right now. 🙏
Sending prayers 🙏
How have you been doing?
My grandson has this and can not get my daughter to try Lions Maine mushroom there are some things that catch my eye. Like the hippocampus, it helps in old people with dementia, it helps to regrow the hippocampus. And was very saddened to hear that my grandson was terminal. My heart goes out to you and your sons.
Im sorry, How is he doing now?
I have no words, just trust Almighty God ❤
... Sure you do know the Almighty God did it, don't you?
What is the time line of these children getting this. Early dementia for kids? Is this something new? Like myocardidis sweeping the planet?
No this isn't covid related you nut it's was discovered in 1963 lol
My pals daughter as just passed from this. Had 22 years with her
Sanflippo syndrome is typically diagnosed by age four the longest life is early twenties however most kids with the syndrome die either before ten or their early teens.
My child syndfilepo mps3 please medicine
Sis are you from india.please tell me
@@shenbas7306 yes Indian
I believe, a miracle of Jesus Christ for little Jack his will be don Amen
I wonder if carnivore diet would help? It has no carbs or sugars