GRAND LAKE, La. (KPLC) – Six-year-old Gracie Gotte was diagnosed with Silver-Russell Syndrome when she was born. The genetic disorder is a form of dwarfism and affects Gracie’s body asymmetry.
“It affects everything. Her hands are different sizes, her feet are different sizes. She wears different size shoes. She has one like chunky leg and one skinny leg, her ears are set differently, that they can never fix,” said Jade Gotte, Gracie’s mom.
Gracie prepares for a life-changing procedure called leg lengthening surgery, which will take place in New York.
The family says the surgery will cost more than $40,000.
“Because she has a form of dwarfism that the rod has to go on the it’s still on the inside of her leg but its on the outside of the bone and they use a little machine and it’ll pull it down, pull it down, pull it down until they get what they want increased then the bone grows back,” Jade Gotte said.
In every one to 100,000 live births a newborn is diagnosed with Silver-Russell Syndrome.
When first diagnosed, the family had a difficult time finding doctors in the area.
“It’s not as widely known as you would think. Even the one in 100,000, even less than that with doctors. So, we’ve had to travel. She’s got doctors in Houston. She’s got doctors in New York City, Shreveport, so, everything with her is a travel to find somebody that’s knowledgeable with the topic,” said Harvey Gotte, Gracie’s dad.
The family has started “Supporting Gracie” to help raise awareness about the condition in the community.
“We appreciate the community support. Everybody has donated, who has shown up, or anything, volunteered it’s beyond what we even thought would happen like, its mind blowing,” Jade Gotte said.
Gracie and her family will fly to New York this summer for the surgery on June 29.
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