My granddaughter, Frances, has been diagnosed with a very rare form of Leukodystrophy called Vanishing White Matter Disease. (VWMD) is a rare, inherited, and progressive neurological disorder that affects the brain and spinal cord's white matter, potentially leading to loss of motor skills (walking usually goes first) followed by ability to sit unassisted, speech, use of hands, head control and ability to swallow.

There are many unknowns, but at the same time, research has uncovered some potential treatments and therapies to help patients live normal lives. There are doctors who have dedicated their lives to figuring this out and finding a cure! There are people who have survived decades with the disease and have led productive lives, so yes, there is HOPE!

We, as a family, are hopeful and positive that she will lead a long, happy and healthy life with the support of a team of dedicated, determined professionals and of course, her loving family, and YOU!

Please read through the updates and view some pictures of Frances with her sister (James), her father (Alex) and her mother (Kasey). They are a beautiful family and have built an incredible life together.

This disease is not curable, but it IS TREATABLE!

I started this fundraiser to help Frances and her family with the associated costs of her treatment and to provide for future unknown expenses they will face as time goes on.