Time to do a little test.
Do you know anything about VWM? (Vanishing White Matter disease)
My family has learned a lot about it since my daughter befriended a mother and son dealing with this disease. They have both endeared themselves to us with their continued smiles and enormous amount of courage through this whole journey.
We went to a little extra effort this morning to support mom, Bethany, and son, Isaiah. A little west of us (78 miles to be exact) there was a walk event…..
Isaiah’s Walk to Cure VWM. There was a very supportive turnout and we are so honored to have been a part of it. In Bethany’s words,
“If you do not know anything about Isaiah, he is a 4 year old boy living with a rare brain disease called Vanishing White Matter Disease. He is 1 of 129 people in the world living with the disease. VWM is caused by a mutation in the DNA, which is a result from the parents passing on mutated genes. Isaiah has 2 mutations in his DNA. It is believed he is the only person living with those two types of DNA mutations, individually and combined. We are doing this event to raise awareness and funds to support VWM research to find a cure for Isaiah and the other 128 people.”
Today we celebrated his 5th birthday……one he wasn’t predicted to see.
When it came to helping a child, there clearly were no boundaries today.
Happy 5th Birthday Isaiah!