Hydronephrosis and Epilepsy
Meet the Vasile Family.
The Vasiles went from hospital to hospital trying to find answers of Tommy's condition. They
never received a true diagnosis, instead receiving several different diagnosis. Tommy suffered from seizures. He had to be tube fed, he had trouble with his breathing, and also had severe hypotonia. "Everyday was scary but everyday was a true blessing. Our daughter, 3 at the time was our light, our reason to be strong".
Tommy lost his battle with Epilepsy at 20 months old. His family continues to keep his memory alive.
How we found support -
-Our Pedatrican was a tremendous support system for us.
-We leaned on our family and close friends
-They found strength with the help of Tommy's therapists and nurses.
Coping with Ohtahara Syndrome - Unfortunateley we found very little information about Ohtahara syndrome on the web. We spent many month trying to find a similar story to Joeys. I've built this site in the hopes that it can help even one family find some answers.
I have asked the families below to share some of their coping methods as well as their advice on support. The way I stay connected to my baby is through this nonprofit. It allows me to talk about him, remember him and bring something wonderful to others families that are dealing with a special needs child.
How we found support -
-Family and friends
-Our pediatrician was amazing and made herself available 24/7.
-Pediatric Palliative Care Program at Morgan Stanley Children's Hospital
-Pediatric Hospice Program at St. Barnabus
Meet other families who've had to face epilespy how they found support.
Severe Epilepsy - Partial Complex Seizures
Meet the Duell Family. Their son Marshall suffers from partial complex seizures - Marshall starting having seizures at 3yrs of age. There was often no break and he would go into status epilepticus. It was during one of many hospital stays they were informed Marshall would be a good candidate for surgery, but insurance denied them over and over. Finally after several more helicopter rides to the hospital, he was approved for surgery. He barely made it but the surgery was a success. Marshall has been seizure free for months.
How Marshall's Family found support -
-The Mighty, on facebook. The articals are wonderful
-Resources for Families with Special Needs, on facebook - They post about autism, epilepsy, CP, genetic disorders and more.
-Local epilepsy Foundations - Providing support groups for familes and awareness in local schools teachers.
Shwachman Diamond Syndrome
Meet Jordyn who suffers from SDS. - SDS affects multiple organs and systems of the body. In Jordyn's case primarily the bone marrow, the pancreas and the bones. Jordyn also suffers from seizures. Although Jordyn spends alot of time at the hospital for test, procedures and IVIG (Intravenous immunoglobulin) treatment, she is the sweetest, most loving little girl with an infectious laugh and feiry spirit. Sadly, The Prognosis for SDS is less than favorable with the majority not surviving the second decade of life, however, her family remains positive and stays hopeful.
How Jordyn's Family found support -
-The family support groups (through Facebook)
-The Shwachman Diamond foundation
-"Welcome to Holland!" By Emily Perl Kingsley