A STAR for BRANSON

Found tion

To support Salla disease treatments, research, education, awareness, & family networks  

A note from the VanAtta family

 

Dear Friends,

 

Where to begin, we didn’t get Branson’s diagnosis of Salla diease until he was 18 years old. We have known for about 6 months now. We have been an Undiagnosed Leukodystrophy since he was 2 years old. When we had his MRI, blood work, Urine and Neurologist appointment. It started by Branson never meeting his milestones as a baby and I just knew something was off with him. He was not like his two older Brothers. Our Pediatrician would reassure me that every baby develops at their own pace and he was fine.  But we were finally made an appointment for the testing and a Neurologist at 2 years old. He was only saying a few words and scooting on bottom to get around. Never having crawled or walked. The testing came back as Hypodemyelination possible Canavan diease. We were told that is a type of Leukodystrophy and life expectancy is 4 years old. We were devastated. We immediately got a 2nd opinion at the Children’s Hospital we go to now. And we were told after repeat testing basically the same thing except he was negative for all the Genetic tests for the types of Leukodystrophys but his brain said other wise.  So we were given the the Undiagnosed Leukodystrophy.             

 

Over the years we have done therapies. He has had to get a feeding tube, for his thin liquids due to aspiration into his lungs.  He started having multiple daily seizures at around 7 years old. By 9 years old he needed a VNS implant to help control the seizures on top of all the medication daily he takes. Last year he was officially diagnosed with Lennox Gastaut Syndrome which is a severely hard to treat Epilepsy. He has never walked on his own. But can walk in a gait trainer or stand in a stander for 15 mins. He says a handful of words. But he understands everything you say.  He loves people and is very social. And still attends school.  He has frequent hospital stays for illnesses like pneumonia or viruses. Or his epilepsy.

Branson is almost 19 years old so why I’m not sure if we would see a cure or help for this diease.  I am very thankful to be part of helping the future families of Salla diease. Finding a medication to slow the progression would be wonderful.  I have two older sons and two little grandchildren that I also think about. Because I know this is hereditary. So Bless everyone for helping and I’m so thankful for this opportunity for Branson and other Salla children 


LeAnn VanAtta

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Salla Treatment And Research Foundation | PO Box 1051 | Riverdale Station | Bronx, NY 10471

©2018 by STAR for Ben