My Nonprofit Reviews

Grace Williams is a 2 year old toddler from Jamaica who was taken here last year August to conduct genetic testing to assertain the cause of her having multiple seizures per day despite being on 4 medications. Grace was born on June 10th 2021. She has three older siblings who are in Jamaica with her Dad. She started having seizures as early as 3 weeks old after having febrile fever. She has been admitted in the hospital multiple times for uncontrolled seizures; as many as 80 or more seizures per day even on strong doses of medication.

Many tests were done to assertain the issue, however not much was found. Grace has global developmental delay among other issues. She was seizure free for about 2 1/2 months, before she started having multiple seizures again. She was admitted in the hospital here, in late September of 2023, with multiple complications. She spent 4 moths in the hospital because of many complications.

A genetic test was conducted and she was diagnosed with Dravet Syndrome. I became a member and had received a package with many useful items and a lot of information about what approach to take and how to cope as a parent whose child is living with Dravet Syndrome. I didn't felt alone anymore. The hospital team all did a great job to get her at a place where she could go home. Since she wasn't able to get into a rehab because of limited insurance. Grace was in need of specialized care and multiple specialized equipments.

With the limited insurance we had we were in need of some assistance. It was devastated and frustrating. However, after reaching out to the Dravet Syndrome Foundation we received assistance and was able to take Grace home. We are so grateful and thank the foundation for their assistance. Because of the assistance Grace was home recouperating and is doing well. Grace was home for one month but is back in the hospital with many medical complications. Thank you Dravet Foundation we couldn't have done it without you.