Please help me raise money for my friends, Jenn and Joel Tourjee. Their daughter, Jana (6) was diagnosed with Metachromatic Leukodystrophy (MLD), a highly progressive and rare genetic brain disease that affects motor and cognitive function and is ultimately fatal. Jana’s MLD was detected early enough that treatment is possible and she has been approved to receive cutting edge gene therapy at the University of Minnesota Masonic Children’s Hospital in Minneapolis!
Insurance finally agreed to pay for Jana’s gene therapy!
While we no longer need to raise enough money to cover the entire cost of the therapy, there are other expenses involved in seeking this treatment. We are continuing to raise money to help pay for the extensive testing required by the FDA that is not covered by insurance. This will also help cover travel, lodging and other expenses for the family during the months they will have to stay in Minneapolis.
Jana is a sweet, funny, strong, six-year-old diva with a larger than life personality. There is not a single heart that does not light up when she walks into the room. She loves unicorns, rainbows and all things Dollywood!
MLD is a rare neurological (nervous system) disease that affects the white matter in the brain and spinal cord. MLD targets myelin, which is the protective insulation covering the nerve cells. Without myelin, nerves can’t communicate well. This lack of communication leads to a progressive loss of neurological function since the brain and the body can’t receive signals from each other. Ultimately, MLD is fatal if left untreated.
Please help this beautiful little lady battle this horrific disease and get the best treatment available in order to live the rest of her life to the fullest and in the most comfort possible.
Here is a short 3 minute video that explains MLD and why it causes disease: https://www.youtube.com/watch?v=MBghKIUHcTI
Learn more about MLD at http://curemld.com/