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\u2019s body asymmetry.<\/p>\n
\u201cIt 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,\u201d said Jade Gotte, Gracie\u2019s mom.<\/p>\n
Gracie prepares for a life-changing procedure called leg lengthening surgery, which will take place in New York.<\/p>\n
The family says the surgery will cost more than $40,000.<\/p>\n
\u201cBecause she has a form of dwarfism that the rod has to go on the it\u2019s still on the inside of her leg but its on the outside of the bone and they use a little machine and it\u2019ll pull it down, pull it down, pull it down until they get what they want increased then the bone grows back,\u201d Jade Gotte said.<\/p>\n
In every one to 100,000 live births a newborn is diagnosed with Silver-Russell Syndrome.<\/p>\n
When first diagnosed, the family had a difficult time finding doctors in the area.<\/p>\n
\u201cIt\u2019s not as widely known as you would think. Even the one in 100,000, even less than that with doctors. So, we\u2019ve had to travel. She\u2019s got doctors in Houston. She\u2019s got doctors in New York City, Shreveport, so, everything with her is a travel to find somebody that\u2019s knowledgeable with the topic,\u201d said Harvey Gotte, Gracie\u2019s dad.<\/p>\n
The family has started \u201cSupporting Gracie\u201d to help raise awareness about the condition in the community.<\/p>\n
\u201cWe appreciate the community support. Everybody has donated, who has shown up, or anything, volunteered it\u2019s beyond what we even thought would happen like, its mind blowing,\u201d Jade Gotte said.<\/p>\n
Gracie and her family will fly to New York this summer for the surgery on June 29.<\/p>\n
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