Imagine being trapped in a body you can’t control. You can’t dress yourself or bathe yourself. You suffer violent tremors when trying to raise a spoon to your mouth. You are confined to a wheel chair, because you can’t control your leg movements. For you, tying your shoe is a major accomplishment. Treatment after treatment has been endured in an effort to bring things under control. This is what life is like for Julie Holt Legas.
Julie wasn’t always this way. Just a short time ago, life was normal. In October 2011 she and her husband Scott, a Detroit Firefighter, were enjoying life. Julie was a Dean’s List student perusing a Nursing degree. She wanted to care for others. Provide comfort and assistance to those in need. She began having unexplained lightheadedness and blurred vision. Her ability to walk and balance normally began to diminish.
October 2011 was the start of numerous visits to neurology, rheumatology, and her primary care doctor. A spinal tap was done in February 2012 and it was discovered that Julie’s spinal fluid’s protein levels, t-cells, etc. were way out of balance. Since then she has been treated at both the Cleveland Clinic, and Mayo Clinic. She has undergone test after test, IVIG treatment (protein infusion), Riutuxan (a form of chemotherapy), Plasmapherisis (blood wash), and Cytoxan (another form of chemo).
With her motor skills and speech abilities continuing to degrade, Julie was confined to a wheelchair (since May 2012). She needs help doing the everyday things you and I take for granted. Julie describes this as “being trapped in a body that doesn’t work”. Thankfully this disease attacks the body, but not the mind. As Scott says “Julie is sharp as a tack.“
In January 2013, Scott and Julie went to the Mayo Clinic. Hoping for another treatment, they were told that all the traditional treatment that are approved in America has been done, “go home and adjust your lifestyle.”
Being the fighters that Julie and Scott are, they were not satisfied with that answer. They will be going to Hope Hospital in Zhuhai, China for stem cell treatment. This treatment is cord cells, NOT embriotic or fetal cells. It consists of four injections that will provide approximately 400 million cells. This treatment has been showing promising results for patients with Cerebellar Ataxia, but it is extremely expensive and not covered by insurance.
Please join us in supporting Julie’s Journey back to health. With your help we can give Julie and Scott a fighting chance. Every donation, large and small will make a difference.