My son Simon is 5 years old. He is developmentally about 5 months old. He has seizure, hearing and vision impairement, dev. delays. He was born with a cleft lip. He also has hypotonia and nystagmus. He's a good happy little boy and I love him so much!! I do a website at www.simonpeters.org. for him.
I also helped found a nonprofit org for PKS called PKS Kids. www.pkskids.net.
We live in Michigan.