Who is Anabelle?
Anabelle Wilson is a sweet 2 year old who was diagnosed earlier this year with Metachromatic Leukodystrophy (MLD). Alex, her mother, writes:
"Anabelle was born normal by any mothers 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.
Now in August 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!!!
Who benefits from Anabelle's 5K Walk?
There are two beneficiaries ... the MLD Foundation and Anabelle's Fund. Donations are split 50/50 with 1/2 being a tax deductable gift to the MLD Foundation and one half to Anabelle's Fund is for her ongoing care and medical expenses - (the portion of your donation made to Anabelle's Fund is not tax-deductable). The MLD Foundation is a non-profit 501c3 serving MLD families, increasing awareness, and influencing research for metachromatic leukodystrophy in the US and around the globe. Learn more about the MLD Foundation here. Gifts to the MLD Foundation are tax deductable. You will receive a receipt with all donation details.
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!
Packet Pick up
Beat the lines Friday night ... Packets can be picked up as follows: THURSDAY Oct 17 2-6pm Foot Zone - 842 NW Wall Street
We need a few volunteers to help keep everyone safe and on course on race night. Please click here to see how an hour or two of your time can help us help Anabelle!
Please support us as a sponsor... This is Bend's first Glow Run, so there will likely be extra media and public attention. Based on your commitment level, you will be featured on our website, t-shirts, racer packet, and more. Please click the link below for more information.
Please support the Sponsors who graciously support us!
SUNLIGHT Level Sponsors:
MOONLIGHT Level Sponsors:
STARLIGHT Level Sponsors:
TWILIGHT Level Sponsors: