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This is our sweet little guy, Danyal. He is four years old. We did not know there was an issue with him until he was about 11 months when he was not meeting his milestones. Through an MRI, we discovered he had a brain injury around the time of birth. Our world turned upside down not knowing about disabilities, financial burden of going to the city for appointments, and the fear of the unknown.

When he was 2.5 years old he had multiple diagnosis including global developmental delay, hypotonia, pvl brain injury, and cerebral palsy. He was still not meeting his milestones so we did genetic testing which releaved he has a ultra rare genetic disorder called AP-4 SPG51. Danyals genetic disorder is progressive and will get worse as he ages. He also suffers from febrile seizures and cannot stand/walk or chew properly. I have not been able to properly connect with a family that has this rare genetic disorder.

We are learning to take it one day at a time and be thankful for the little things. Danyal has a contagious smile and is a content and happy child. We as a family learn new things everyday and are learning to keep him included in everything we do even if it isn’t easy. We try to live in the moment and take it all in and find happiness in the little things and that is what keeps us going.

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