My son made the paper!

[soniqstylz]

Yesterday, Feb 29th is recognized worldwide as Rare Disease Day.  My son has GM1 Gangliosidosis, diagnosed in 2011 -- since then I've been advocating for him and for those with rare diseases.  So we got the local paper to write an article, and the person who is doing a documentary on him took pictures.  

 

 

Here's a link to the story online: http://www.daytondailynews.com/news/lifestyles/health/living-with-a-rare-disease-armands-story/nqYsX/

Edited March 1, 2016 by soniqstylz

[Draconian Guppy]

Best to your son mate!

 

Never heard of the disease   https://en.wikipedia.org/wiki/GM2_gangliosidoses   

[soniqstylz]

2 minutes ago, Draconian Guppy said:

Best to your son mate!

 

Never heard of the disease   https://en.wikipedia.org/wiki/GM2_gangliosidoses   

Tay-Sachs is much more well-known, but closely related.

My son has the late infantile, and luckily a lot of work on a cure is being done

 

https://en.wikipedia.org/wiki/GM1_gangliosidoses

[+Gary7 Subscriber²]

All the best to your son. I hope that a cure will be found soon.

[soniqstylz]

Just now, Gary7 said:

All the best to your son. I hope that a cure will be found soon.

Thank you!  He's in a clinical trial up in Minneapolis with some of the best doctors in their field, and they call him their poster child