Hi Everyone,

Not easy for me to ask for help but....
I'm Hugos mum and today I turn myself to the world to ask for your help..
I no longer want to see my 18 years old son isolating himself because of his condition, becoming more and more depressed and desperate.
I need him to be able to do yoga, to go to the therapists able to help him to get back at least, a tiny percent of his mobility .  
I need my son to have some autonomy, even the slightest..
I need my son to have a community he can rely on, I want my son to meet people like him, I need my son to find back the beautiful smile he has on the picture.
I need my son to be happy despite the fact he has the Rasmussen Syndrome, despite the holes in his brain, despite the fact he is limping, despite the fact he is not using his left arm anymore and despite  the hundreds  seizures he had and still has.

Rasmussen's syndrome is rarely fatal, but its effects can be devastating.

The seizures are typically relentless and weakness and mental impairment often follow.
CT and MRI scans of the brain show evidence of a slow loss (atrophy) of brain substance.
Despite the drastic nature of hemispherectomy, where half of the brain is removed, the surgery can be very helpful in stopping the seizures and preventing mental impairment.
Children adjust to hemispherectomy remarkably well. After the surgery, most can walk and run, although with a limp. Hand function on the side opposite to the surgery is often significantly impaired and fine motor skills are not possible. Even when the language hemisphere is removed, children typically regain a considerable amount of language skills. After age 6, people recover less well from the side effects of hemispherectomy.

Hugo has been diagnosed with the Syndrome 2 years ago, at the age of 16...
We do  not talk about hemispherectomy yet, but it might eventually be the case.

In the meantime , and for all the reasons I mentioned above, we need your help, to create a group support, to go to these therapists, to help him to paint more and more as this is the only thing he wants to do, to find a supervised place for him to live and have his "autonomy".
Belgian government support is more then poor unfortunately.
We just need you because as you can imagine the therapists once a week, the monthly rent for the supervised apartment , the health cares he needs, all of it has a certain cost....
We need your ideas if you have some...
I need you because after 11 years of fight , my resources are becoming smaller and I need to keep fighting with everybody who wants to join, I need to fight for him, for our family.
I need to keep fighting to keep standing up.
From the bottom of my heart I already thank you.