Ever since my niece has been diagnosed with Vanishing White Matter Disease (VWM), I have been on a quest to #findacureforvwm.
Isabella was 2 yrs old when my sister noticed, that she seemed to stumble more than other kids her age. Her pediatrician said Isabella would outgrow it. But she didn’t. As she grew, she had trouble skipping and jumping.
When Isabella was 4, an orthopedic doctor tested her Babinski reflex and referred her to a neurologist. This was 2009. That’s when we heard “leukodystrophy” for the first time. MRI results were sent to a specialist in the Netherlands,Prof. M.S. (Marjo) van der Knaap .
Few months later, she diagnosed Isabella with an incurable, fatal genetic disorder called Vanishing White Matter (VWM).
Currently there is no treatment or cure for VWM. Isabella wears orthotics and struggles to physically keep up with peers. For long distances she uses a wheelchair to move around, especially the airports. In addition to this, she attends physical and occupational therapy and wears protective cap at school. However, she’s as happy as can be and brings laughter to everyone, especially her cousins. She loves Minecraft :)!
According to the United Leukodystrophy Foundation (www.ulf.org), this disease causes neurological deterioration, and, eventually, coma and death. Fevers and illness can make the deterioration happen even faster.
Children born with this disease appear to be normal. As they grow, symptoms such as muscle spasms, abnormal drowsiness, fevers and loss of muscle coordination appear.
There are many different genetic mutations that can lead to this disease. Prof. Orna Elroy-Stein at Tel Aviv University is researching potential drug treatments that could slow the progression of the disease.
Many people with this condition do not usually live longer than their 20s.
Your donations will fund the science that saves the lives of children like Isabella. It would be amazing if we could reach $2,600,000. Even if it’s a small amount, please consider donating:
***Note: All 3 ways above go directly to Prof. Orna Elroy-Stein VWM research ****
To learn more about VWM : http://ulf.org/vanishing-white-matter-disease
To read about Prof. Orna Elroy-Stein research : http://www.elroystein-tau.com/research/
To spread awareness see : Find a Cure for VWM
Written by Isabella’a aunt