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SMG41

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ALTERNATING HEMIPLEGIA OF CHILDHOOD FOUNDATION INC
September 13, 2013

During infancy, our son displayed abnormal posturing, constant irregular eye movements, and hemiplegia that progressed into frequent attacks of full body paralysis lasting for days at a time. As months passed, he was frequently misdiagnosed and received numerous tests that all came out normative. It took over two years to get a definitive diagnosis for our son and by the time he was finally diagnosed, our parenting had been in question and we felt defeated.
The day we heard he had AHC was bittersweet. For once, we had a medical professional that believed us and knew what was going on with him. At the same time, we were told that due to the rarity of the disease, only one treatment option was available and there would be no guarantee it would be effective at all. The relief of identifying the problem was overshadowed by many more scary and unanswered questions.

It wasn't until we came in contact with the AHCF that the feelings of loneliness and hopelessness slowly started to fade. We were able to have a support system of individuals who knew exactly what we were going through. Without them we wouldn't have had the opportunity for genetic testing that finally identified the mutation causing our son's disorder or known the treatment options available to our family.

The volunteers and individuals that make this foundation are amazing. They are proactive at increasing education and awareness, offer support, and truly care about all the children affected with the disease.

More feedback

How would you describe the help you got from this organization?

Life-changing

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2013

MY ROLE:
Client Served