Kiara Goes to Rehab Twice a Week to Strengthen Her Muscles
Kiara goes to rehab two times a week to strengthen her muscles. She has significant support from her family and school.
The 13-year-old found out last November that she has a rare condition called Ehlers-Danlos syndrome, which means she suffers bone dislocations on a weekly, and sometimes on daily, basis.
However she is lucky to have her two sisters, Crystal and Tayla, who will walk with her on that journey. Now, thanks to Crystal, the pupils at Delacombe Primary School have joined as well.
At a Warm Clothes Day yesterday the school raised $273.10 towards research into the condition. Crystal, 11, emptied her own piggy bank for the cause and spoke with the school’s student leadership co-ordinator, Lauren Brown, to mobilise the rest of the school behind her sister.
“My little sister is amazing,” Kiara said. “I love her so much.”
Ehlers-Danlos syndrome, also known as EDS, is a genetic condition that causes collagen to become faulty.
It can effect skin, muscles and joints. In Kiara’s case, it results in weakness in her connective tissue so that she suffers dislocations and hyper mobility from the smallest amount of pressure.
She has had eight of her 10 fingers operated on, and had to have surgery to repair her jaw two days ago.
“It is painful but you get used to the pain,” Kiara said.
“I go to rehab two times a week to strengthen my muscles because that helps, but sometimes I can’t do anything.”
At present there is no cure, because collagen cannot simply be replaced in the body. Blood is sometimes injected to help create scar tissue but operations usually end up being short-term fixes.
Although EDS is a genetic disorder, there have been no known cases of it in Kiara’s family. However, now that she has the condition it will be carried with her line.
Kiara is a year-eight student at Phoenix Secondary College in Sebastopol but was a pupil at Delacombe Primary School for seven years. Crystal is in grade five at Delacombe Primary.
May was awareness month for EDS, and research for a cure is being conducted by the Murdoch Children’s Research Institute at the Royal Children’s Hospital in Melbourne.”
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