I want to introduce you to Olivia.
Olivia is the almost-6 year old daughter of our friends Christine and Eric Hoffmann. I first met the Hoffmann's through mutual friends about 5 years ago, when Olivia was a perfectly healthy one-year-old little girl. A few months after her 2nd birthday, she was diagnosed with a very rare and terminal illness called Metachromatic Leukodystrophy (MLD). In less than one years time, this disorder caused Olivia to go from a healthy, smiling, bright-eyed toddler to a little girl who could no longer control any movement, talk, eat, see, or even smile.
MLD is caused by a genetic defect that prevents cells from producing an enzyme the body needs in order to break down a fatty substance called sulfatide. Lacking this enzyme, sulfatide builds up in the brain and spinal cord, destroying the white matter, called myelin, which surrounds and protects the nerves. Without the myelin insulation, the nerves gradually quit working. This “demyelination” causes all of the problems of MLD, which include loss of mental, motor, and organ functions, and eventual death. Children like Olivia, with the late-infantile form of MLD (there are also juvenile and adult forms), may live 5 years, but so far the disease is always fatal. (Source: http://www.caringbridge.org/az/olivia/). The doctors told Christine and Eric Olivia would likely not live past 5, but still is still fighting at 6.
Olivia and her two brothers, twins Carter and William
As Olivia celebrates her 6th birthday this Saturday, and her family celebrates every moment they have with her, the Hoffmann's and the foundation set up her name, are gearing up for the Second Annual Olivia's Walk.
The walk will raise funds for the MLD Foundation, a non-profit 501(c)(3) charity serving MLD affected families and researchers throughout the world, and bring more awareness to this rare and fatal illness.When and Where:
Saturday, May 17th at Tempe Town Lake
Registration begins at 7:30 AM and the walk starts at 8:00 AM.
It is a perfect place to bring the whole family to get some exercise, help a good cause, and meet beautiful Olivia and her family.
For full details on the event, and more information about Olivia, please visit her website: www.oliviaswalk.org
You can click here to watch a tribute video to Olivia, with clips from last years walk.
I visited them recently and we were able to take a few pictures. There are not enough words in my vocabulary to express to you what a remarkable mother and woman Christine is. Her devotion to her family is unwavering and she has handled this incredibly tough hand they have been dealt with an inordinate amount of grace and strength. I respect and admire her more than words can express.
If you are able to attend this Saturday, please register first on Olivia's site. Your donation includes a t-shirt and helps to support this important and personal cause.
Labels: PERSONAL, PORTRAITS, RESOURCES
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