Goal Reached 22/06/2012
I have a son named Ethan who is 3 years old. When he was 6 months old, he was diagnosed with Lissencephaly (smooth brain disorder) it’s a very rare disorder that affects 1:65000 children. Most children with this disorder pass away by age 2, the rest of them can live into adulthood with varied disabilities depending on God’s will and Early Intervention Therapy.
When my son was 6 months I asked his doctor if he will be able to sit up on his own, walk, talk, avoid a gtube play and with toys and he said “I don’t know the brain is complex we will have to wait and see, but in the meantime my advice to you is give him as much therapy as possible.” My son is 3 and I am happy to say he has avoided the gtube, we feed him orally pureed foods and he can sit up independently.
Currently his therapists have him learning to talk (communicate non verbally) and play with toys. Also they are working on him alternating his feet in a borrowed walker device and have recommended his own walker fitted to him and braces for his legs to assist in standing appropriately. The Government pays for half and I have to pay for the other half out of my own pocket, since I don’t have benefits.
My son is labelled as severely disabled and I am still currently on the waiting list for Respite and Special Services At Home funding. There are children receiving this funding that are not as severely disabled as my son and I don’t think that’s fair. I am struggling to pay for this much needed equipment in order for my son to accomplish his goals.
Ethan’s parents asked for a walker to help Ethan become independently mobile, and with your generous donations we were able to do this for him.