Who is Anabelle?
Anabelle Wilson is a sweet 4 year old who was diagnosed early in 2013 with Metachromatic Leukodystrophy (MLD). Alex, her mother, writes:
"Anabelle was born normal by any mother's standards but that would all change. She was born in December 2010 and was the most beautiful thing I had ever seen. I can clearly remember being so overwhelmed with emotion, I had never felt love like that. We took her home and everything was picture perfect. Anabelle blew through her milestones. She was sitting, standing, walking, and talking all before other kids her age. We were so proud of her! Slowly we started to notice that she went from being way ahead to falling far behind.
When Anabelle was 18 months we saw that she couldn't take more than a few steps without falling over, her legs were not supporting her properly, and she was no longer speaking as well as her peers. I was really concerned so we went to see a physical therapist. The PT said that she displayed signs of a child with Cerebral Palsy. We were shocked, but CP was totally do-able. The doctors and therapists assured us that she was on the very mild side of CP and should go on to lead a normal life. But very mild turned into moderate and then tuned into severe, and CP is not supposed to get worse.
In March 2013, we had an MRI done. The results came back and were more shocking than we could have ever expected. Anabelle had a rare genetic brain disease called Metachromatic Leukodystrophy (MLD). MLD causes the white matter in the brain to disintegrate. Children with MLD are often born normal and then slowly start to lose all of their learned functions.
As of August 2013 our beautiful, over-achieving, intelligent daughter can no longer walk, talk, stand, sit or eat and has a life span of about 5-10 years. MLD is one of the most devastating diseases a child can get, and currently there is no cure. Please join us in raising awareness and raising money to fund research!"
What is a Glow Run/Walk??
It is held at sunset. Everyone is encouraged to wear their brightest neon colors, glow bracelets and necklaces, and bring flashlights, and headlamps! ANYTHING THAT GLOWS GOES!!!
What is Metachromatic Leukodystrophy?
Metachromatic Leukodystrophy (MLD) is a rare, inherited disease. People who are affected by MLD lack an enzyme in their blood called Arylsulfatase-A, (ARSA). Without this enzyme, sulfatides are NOT broken down and instead build-up in the white matter of the brain and the rest of the body causing destruction of the myelin sheath (demyelination). Without an intact myelin sheath there is a breakdown in communication between the nerves and the brain resulting in a progressive loss of physical and cognitive skills leading to early death. There is no cure yet, but with increasing research there is hope!