A few years ago, Alexa began experiencing rashes on her joints. Her doctors thought it was just eczema and the rash continued. Finally, a specialist was able to diagnose Alexa with juvenile dermatomyositis (JDM). JDM is an inflammatory disease of the muscles, skin, and blood vessels. Primary symptoms are muscle weakness and skin rash. Very rare, the life threatening disease affects about three in one million children each year. The cause remains unknown.
With Alexa, the “rashes” were actually inflamed blood vessels. She was placed on oral medication for six months, but saw no improvements. Another specialist in the disease placed Alexa on a more aggressive treatment of daily medication, a weekly injection, and monthly intravenous immunoglobulin (IVIG) infusions. IVIG contains the pooled immunoglobulin G from the plasma of approximately a thousand or more blood donors. Alexa has improved to the point that she is now only receiving the IVIG infusions. However, she has now also developed arthritis and has to take daily medication to control the condition.
Alexa is an outgoing, funny little girl. She loves watching Sheriff Callie on TV, and playing with her Barbie dolls. Her favorite princess is Belle from Beauty and the Beast. Alexa told us if she could meet anyone it would be the fabulous Miss Dolly Parton.
Kids Wish Network is hard at work planning a once-in-a-lifetime experience for Alexa; check back later to read more details about her wish!