Arms Around Amelia

Amelia needs your help treating her debilitating genetic disease. 

Hi, I'm Jan and Amelia is my adorable niece. Like many 6-year-olds, probably even one you know, Amelia loves to read, play dress-up, and tell jokes. She goes to kindergarten, where she has made friends with all her classmates. Amelia is a chatterbox who can easily carry on a conversation with adults and kids alike. Although she has had some challenges keeping up with her friends, we thought Amelia was simply developing a little more slowly. We were devastated to find out instead that she was born with a rare degenerative disease called Metachromatic Leukodystrophy (MLD).

 

Until recently, like all 6-year-olds you know, Amelia enjoyed running and climbing and riding her bike. She loved to draw and color and practice her writing skills. This catastrophic disease has stolen all of these things from her and is guaranteed to take so much more.

 

MLD gradually causes a loss of all motor and neurological function. The sufferer loses the ability to walk, talk, and swallow. They lose all intellectual, thinking, and memory skills. In later stages, sezuires, blindness, and hearing loss are common. Once it is discovered, life expectancy is only 10-15 years. MLD has no cure but treatments have been developed to slow and even halt the disease's progression while providing improved quality of life.

 

Although Amelia has lost some skills and abilities, so far, her symptoms are relatively mild. Amelia can still walk and talk and think. She is bright and clever and her personality is still intact. But, without treatment, Amelia will lose all of those things as well. Her best hope is a treatment performed only at the University of Minnesota, thousands of miles away from Amelia's home in Los Angeles

 

Amelia's family is going to incur enormous costs that aren't all covered by insurance. We want to ensure that Amelia's quality of life is the best it can be while she is still with us. There will be doctor visits, physical and occupational therapy, leg braces, a walker, and eventually, a wheelchair, hospital bed, and in-home care. There will be flights, hotels, food, and rental cars. Amelia's home and vehicles will need to be made more accessible as the MLD progresses and Amelia loses more and more functionality.

 

Please put your Arms Around Amelia by donating whatever you can to help. Your gift of any amount will make a hopeful impact on Amelia's future. Please share this as far and wide as you can.