Where There is No Cure, There is a Mother's Hope

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Hiatham Breadiy and his mother, Azeza. 
The first thing you notice about Azeza Breadiy is her immense determination and focus.

Her firstborn son, Hiatham, has a severe form of epilepsy called Lafora Disease. This disease typically doesn’t manifest itself until adolescence. Children grow up normally, with no perceivable problems until they begin to suffer with seizures.

Hiatham is 15 and was recently diagnosed with Lafora. From manifestation, which is normally the first seizure, a Lafora victim will die typically within 10 years. There is no cure. Therapy is primarily palliative and aimed at reducing seizures. This is when Angela Hospice stepped in to support the Breadiy family.
Social Worker
Amanda Davis

Amanda Davis is Hiatham’s Angela Hospice social worker. She has teamed up with Azeza and the family to help find community resources for the many things they need to keep Hiatham comfortable.

The Breadiy family has three other children, Sophie, age 11; Gehad, 8; and Thayer, 10 months old. Hiatham’s father, Elayyan, has been battling Hodgkin's Lymphoma and went into remission late December 2016. Azeza is a lab tech.

The family faces many challenges. Azeza’s goal is to find researchers and clinical trials that aim to find gene therapies and medications to, if not cure, prolong the life of Lafora patients.

There is little awareness of Lafora Disease. The Rare Epilepsy Network promotes early diagnosis so that Lafora is considered by physicians, and the appropriate testing and treatment is initiated without delay.

“It’s tough to get the story out there,” says Azeza, “I’ve been shut down, but not out. Every little bit of awareness helps.”
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"I've known Hiatham since 6th grade and he was one of my best friends...I wish we could talk like we used to. I'm literally in tears because I've known about this for so long and had hoped it would get better, but it hasn't...Hiatham is someone who I can't imagine being gone...so prayers all around from me." - Aiyana Siegert, friend of Hiatham

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