A STAR for TRIPP

Found tion

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

A NOTE FROM THE ROBERTS FAMILY

Our Salla Disease story began on June 28th. Our beautiful little boy was handed to us and our world has never been the same.  We didn't know then that this little baby in our arms would change our lives forever. He brings us joy in everything that he does.  I've never met an individual that is as happy as he is. He has a presence that when you see him you just have to meet him, or most times he has to meet you. He is always blowing kisses, and waving at you. 

We didn't notice a difference in Tripp and other kids until the crawling stage. He crawled at ten months, and didn't cruise until he was twelve months almost thirteen months. So we gave him a little more time. He was our first and only child and everyone said sometimes they take a little longer.  At almost eighteen months old, we were full blown panic. He was cruising but not for long periods of time. We spoke with our doctor who sent us up with a developmental specialist.  They explained he was behind in that area but in others as well. At that time we had also been seeing an audiologist, because Tripp wasn't verbal yet. He had a few words he could say but not many. He maybe said three words. The audiologist explained that he couldn't hear real good out of one ear and the other was one slightly better. (tubes fixed this issue). So at this point Tripp wasn't walking alone yet or speaking. 

The developmental specialist sent us to our neurologist in St. Louis, MO. While there we were told he would need an MRI. Later that year in October, we finally had an answer and it was Salla. Salla was an answer, but not an answer with a lot of answers. I struggled to understand what I was reading and understanding it correctly. Until one day researching I stumbled across this new foundation. A place I could look for answers. A place to speak with other families about what they were doing, and what works for them, or what to expect in the future. It was like a weight was lifted. I've met the sweetest woman through this foundation she was like a breathe of fresh air when I spoke to her. I've messaged her several times with questions and always she there with an answer or a what she did at that time for her son too.

This place is a safe haven for someone like me and I hope that I can pay it forward for someone else one day.

 

Salla might be what my son has but Salla is what makes my son who he is. I wouldn't change it for the world! He is my blessing!.  He makes this mamma's heart so full! 

 

-Randa  

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

©2018 by STAR for Ben