Reese’s Journey

Reese’s diagnosis was and is a long journey. When Reese was born she was completely healthy, she developed just like any other child until the age of 3.

On November 1, 2011 she woke up and could not stand on her own, at first we put it off as she was tired from a long evening of trick or treating and she was just still tired, until she didn’t seem to be getting better throughout the morning. I took her to the local ER and was told her candy might have been drugged, every parent’s worst fear on Halloween. But after all the tests came back negative for drugs they had no idea what was wrong. So we were sent to London Sick Kids. After a week in the hospital, we received a false diagnosis of ADAM that would get better over time. So relieved that she was going to be OK we left and waited. And waited.

Six months passed and it seemed she was getting a little better but then I got a call from her daycare. She was screaming in agonizing pain telling her teachers to make it stop. I took her right back to Sick Kids and them still thinking its ADAM did a blood transfusion treatment with steroids. Our next Neurologist appointment came and with no improvement he started looking at other diagnosis.

First on the list was Vanishing White Matter Disease (VWM). Reese had more blood work to do and they then sent her samples to Georgia to be genetically tested for Vanishing White Matter Disease (VWM). August 29, 2012 was when we got the dreaded news that our daughter would have a short life. We would have to watch her deteriorate never knowing when we will lose her.

Despite every challenge that Reese has faced she has been strong through and through. She is a happy fun loving little girl and she is what gets our family through the hard days with her smiles and positive attitude. She has always been so full of life. Now coming to the end of her grade 2 year she is excited for a full summer of camping! She doesn’t let the fact that she is in a wheelchair stop her from doing things that she loves, and we don’t want this disease to stop her from the life she deserves! We need to find a cure! #believeinreese https://www.facebook.com/groups/1393612534219492/

Help us Find a Cure by donating to VWM Research!

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Written by Reese’s mom.