Jesse and I are often asked, how is Reed doing? Usually the canned answer is "he is doing okay, holding steady from what we can tell". But the truth is he has declined, it seems like a slow decline but yes a decline. Reed has recently started to like a photo books of us before bed. It shocks us as we look through the photos from just a year ago, to 6 months ago to see where Reed was at physically.
100 weeks ago, standing on his own with great balance and hand control
91 weeks ago (November 2014). first sign of symptoms
84 weeks ago, still standing strong
75 weeks ago (February 24, 2015), MRI
72 weeks ago, can still sit with feet in front of him. Now he doesn't have enough trunk support to sit this way anymore.
70 weeks ago, signs of right foot turning in and starting to point
66 weeks ago, still loves the water. Now it is a struggle to take a bath or get him to want to explore the water. Has the sensation of falling with the water around him.
65 weeks ago, still standing strong
55 weeks ago, still enjoys baths and spends hours in them. Now he is in and out in less then 2 minutes and cries the whole time
39 weeks ago, this is now his standard form of sitting and has caused a lot of tightness in his feet
33 weeks ago, needs help sitting now
7 weeks ago, no longer can stand needs help with hands under arms to try and walk but drags feet, sitting with feet tucked under him because this is how he feels the most sturdy
6 weeks ago, helping him walk, a desire he still has and his brain is still telling him to try and do
A mom of another VWM child recently posted these thoughts and I couldn't agree with her more ( I added Reed's name to this). "I believe that if your child suffered from just one of the following in their lifetime that would be reason enough to make you want to find a cure and fight VWM disease. But for Reed to possibly suffer from all of the following before reaching his teenage years is the reason enough why we fight day and night to save his lives." (which we know is what any parent would do)
As the disease progresses, Reed can expect some or all or the following to happen to him
- Unable to walk - Reed can already no longer walk
- Unable to talk - Reed's speech has already delayed
- Unable to eat/swallow
- Unable to sit unassisted - can't sit with feet infront and at times loses his balance with feet tucked under him
- Unable to use his hands - Reed’s hands shake which cause a lot of struggle with a lot of everyday fine motor skills
- Loss of head control
- Epileptic seizures
- Spasticity - already affecting Reed's legs, right side more the left
- Vomiting – Reed has episodes with bad stomach which sometimes results in daily vommiting for a few days and then it is gone for months
- Irritability – Reed shows signs of frustration when physically trying to do something he can't
- Mental retardation
- Blindness
- Deafness
- Coma - some patients die during the coma; others recover slowly, but never to the same level as before
- Death often before reaching teenage years
Again I know we say this a lot but we truly believe Reed will be a part of the cure, we know patience is a virtue we work on daily. At times it is so frustration waiting, feeling like we are not doing enough. Hoping, praying that funds will be raised and progress will be made before Reed gets to far in the progression of Vanishing White Matter.
