Reed is four-year-old from Jesup, Iowa. He was a "normal" developing child until, on November 1, 2014, Reed went down for a nap and when he woke, he struggled to stand and take steps. After no clear answers as to why this was happening, we were referred down to Iowa City to see a neurologist. It was determined that Reed needed an MRI and we were admitted to the hospital.
On February 25, 2015, Reed was diagnosed with Leukodystrophy and then Vanishing White Matter. Reed will suffer a great amount due to VWM. VWM is just like it sounds- the white matter in his brain is disappearing and as this happens, Reed loses communication to the part of the body that the part of the brain was communicating to.
Reed has lost the ability to walk, is very unbalanced in his sitting, has a great amount of unsteadiness in his arms which causes him to not be able to write, struggles with eating and other fine motor skills. He could lose his ability to swallow, see, hear, and will suffer organ failure. VWM will eventually take his life. Leukodystrophy known as Vanishing White Matter Disease (VWM) is a degeneration of the brain.
Currently, there is no cure for VWM. We are in a race against time to Find a Cure for VWM! Time is not on our side; most children born with this genetic disease die at an early age. At this time research efforts are making progress to finding a treatment or cure but because VWM is so rare (Reed is one of less than 200 in the world) the research is greatly underfunded, and we as families suffering from VWM, are doing whatever we can to help fund this to help save our children.
In Memory of Tristan
February 17, 2020
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