4H syndrome Leukodystrophy

[Georgia_2112]

We are the first family in the whole of Wales to be diagnosed with 4H syndrome leukodystrophy. This is a degenerative brain disease and only 150 children are diagnosed worldwide. My son is a bright unique special little boy who brings nothing but happiness to our lives.

[bowlingbun]

I was very sorry to read your post.
My own son was diagnosed with brain damage at birth, but not until he was 8 years old. A very difficult time.

Are you in touch with Contact a Family, who help families in similar situations?
Are you getting help from Health, Education, and Social Services?
Claiming Disability LIving Allowance for him?

[Melly1]

Hi Georgia,

he sounds delightful. How old is he and what age did he get diagnosed?

As his condition is so rare, you need to become the experts so you can advocate for him.

Contact a Family https://contact.org.uk/ is a great place to start and find other families with children with the same condition and information.

Melly1

[chris_210812]

Hello Georgia,

the Alex TLC charity may be of help and able to provide some information.

[url]https://www.alextlc.org/url]

I hope the link works.

Chris