Sioux Falls brothers living with Salla disease
SIOUX FALLS, S.D. (Dakota News Now) - A Sioux Falls family has had to deal with both of their children being diagnosed with a rare disease that has caused developmental delays.
But despite the challenges, they are making the most of every day.
Nine-year-old Grant Hamilton loves books. While his six-year-old brother Eli is always on the move.
“Grant cognitively, I think he’s very bright and loves to learn but doesn’t do quite as well as his brother does with gross motor progress. Where Eli is able to walk pretty independently there. Eli is just mister busy on the go, loves to play, loves food,” said dad Shane Hamilton.
When Grant was three years old, he was diagnosed with Salla Disease, a progressive brain disorder, that affects the central nervous system.
“We learned that I have the mutation. Shane also has the same mutation and then with every pregnancy it was a twenty-fve percent chance of them inheriting that gene, that genetic disorder,” said mom Kate Hamilton.
Kate was pregnant with Eli when they found that out. After he was born, they found out Eli also had this extremely rare disease.
“This disorder, there are about 150-to-200 in the world known cases. And most of them live in Scandanavian countries. It’s a Finnish disorder so the huge shocker as a mom, you can’t read a bunch of books about it. You can’t ask a family member about it. Because no one understood and no one knew what it was. Not even our doctors had seen anyone with that disorder.”
“Rare Disease Day is a time to bring attention to these people showing what they go through and the impact on health care,” said Dr. Benjamine Forred.
Despite the tough situation, the Hamiltons have made the most things. Even though the brothers can’t talk, they’re brothers, they still communicate.
“In the beginning, it was a lot of just kind of trying to guess and sort through it. And they have their little signals that they will do and we figure out as we go along. And then some speech therapists that were fantastic in getting little books that would create this so they could point to it. And then technology has come advanced so we basically have fancy Ipads that have whole talking communication devices there,” said Shane.
“Every day is just joyful. I mean there’s a lot of things that we can complain about, and a lot of things that are challenges everyday. But they just have this innate since of joy in everything they do and it’s kind of contagious so it’s an honor to be their parent,” said Kate.
And these boys are happy about that as well.
While there isn’t much information on the outlook for people with Salla disease. Some who have been afflicted with it have been able to live into their 50′S And 60′S.
On Sunday, Sanford Health lit up the Arc of Dreams and Falls Park in honor of Rare Disease Day.
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