Eva-Rose Sturgess is eighteen months old. She faces a disease for which there is no known cure: leukodystrophy. Her parents felt like their world came apart at the seams when they were told their daughter might not live to see her full childhood. Despite all this, a flash of hope remains. Keep reading to learn more, or follow the story at the source here.
Doctors diagnosed Eva-Rose with leukodystrophy back in January of this year. They said there was no cure for the rare brain disease. Eva’s mom, Mica Morrison, describes the months since as a “roller coaster ride of emotions.” She says that before Christmas, her daughter lived like any normal little girl. Everything changed when she developed a cold in January, which led to her current state.
While there is currently no total cure for leukodystropy, there is a chance to extend Eva’s life. It isn’t cheap, and it’s a long way from her home in Mackworth.
Treatment for Eva-Rose means going to Mexico. It also means raising funds of about $10,000. That’s why members of the Emily Grace School of Dance (which Eva attends) started a fund-raising campaign.
Eva’s mom says they are still waiting on certain tests results to determine exactly which form of leukodystrophy her daughter has. Meanwhile, she has been stunned by the generosity of those donating to Eva’s cause. She views it as evidence that good people still exist in the world.
Mica Morrison also has a message she would like to share with parents. “Trust your instincts,” she says. She implores parents to make sure their child receives medical attention as needed should they even suspect something is amiss.
The Emily Grace School of Dance planned a series of events to help generate funds. The school announced a special performance entitled “Together for Eva-Rose,” a sky dive, and a special walk through Markeaton Park to raise money for Eva’s campaign.
Specialists continue to monitor Eva’s condition and attempt to determine which kind of leukodystrophy she suffers from. If they can figure this out, and doctors give them approval, the family will use the funds raised to pay for Eva’s treatment. Otherwise, the money will be used to create a special holiday of memories for the family and their daughter.
Emily Kerr, principal dancer for the Emily Grace School, acknowledged that no sum of money will fix this problem. “But if we can raise some money to help the family with the treatment or make memories, we will do it,” she continues.
“It would mean the world to us if we could help, as she has gone through so much.”