The things we think about...
Our three-year-old son was given a death sentence, and we
just have to sit back and watch. That is our reality, ever heard of Vanishing
White Matter, we hadn’t either but this disease is a reality of roughly 170 people
mostly children worldwide. That is a hard number to wrap your head around, 170
people, someone give me the odds on two people with the same mutation finding
each other, falling in love and having a child with VWM. Vanishing White Matter
is a degeneration of the brain, the white matter in Reed’s brain is vanishing
and as that happens his body will go with it until it kills him. VWM has robbed Reed of the ability to walk, and causes him some shaky hands and struggles with his speech. VWM is a genetic disease and both parents
have to give the mutation in order for the child to have it. Reed’s expected life span is 5-10 years from
the onset of the disease we are now in year two. Reed started his fight to find a cure for VWM on November 1,
2014. Reed was born on December 3, 2012, a normal pregnancy, a normal birth, a
normal baby, a normal toddler, and then, 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
headed for University of Iowa Children’s Hospital to see a neurologist.
On February 25, 2015, Reed was diagnosed with
Leukodystrophy and then Vanishing White Matter.
There is no cure no treatment and no big money pushing the research
for a cure. As a human you would never in your wildest mind want to feel jealous
or want for your child to have a more common disease, a disease that gets more
attention, a disease where money is being spent on research, a disease where
there is HOPE for a longer life. But we
would be lying to ourselves to say that we haven’t felt that or wished for
it. How would you handle a death
sentence for your only child, how would you handle being told you probably
shouldn’t have any more children, how would you handle being told to make the
most of the time you have. We hurt so
much for our son, we hurt for his desire to do the things he struggles with, we
hurt for him because he doesn’t understand why, we hurt for him because we want
“normal”, we hurt for ourselves because we know people just don’t
understand. The emotions you feel for
others and how “lucky” they are, it is a struggle we face every day, you feel
like an outsider, you feel like you can no longer relate to people. The things
that were easy are no longer, can’t just pick up and go, things you would do as
a family need modification, carry around a three-year-old because they don’t
understand that they can’t walk is exhausting, mentally sometimes more than
physically. Going to friends or an outing where the
kids are running in and out is almost torture as parents, you desire for your
child to be included and a part of something because he is different but the
work involved to help him have a good time is a challenge, he can’t just follow
the other kids. It hurts, it really does
to watch his eyes to see him take in his surrounds and try to push forward as
the others do. We tell ourselves that he
doesn’t know any different this is the life he knows but he does he is starting
to understand and it just flat out isn’t fair.
We dream for a day, week or month on no medical/therapy appointments, we
dream for a trip to the park where he can run and climb without help, we dream
of a bath time where he doesn’t feel like he is going to fall the whole time, we
dream or seeing him run again, we dream for independence of our son.
And we dream of a cure for our son…
We are choosing to fight for our son, we are choosing to be
his voice, we choose to give him “normal” the best way we can, we are choosing
to not accept his death sentence and choosing to believe that he will be a part
of the something bigger, be a part of the cure, be a part of the reason this
disease is no longer in existence any longer.
Do you choose to be a part of something bigger as well, do
you choose to save Reed’s life? When hope feels like it can’t be found for Reed
there is a small number of families that are not taking no cure for an answer
there is positive research very underfunded research being done in Israel and
the Netherlands, we as Reed’s loved ones, we as VWM patient loved ones are
choosing our battle and choosing to fund this research one penny at a time if
we have to, we are choosing to speed this process up so Reed can have a long
life, a “normal” life.
Please be a part of it one penny at a time as well…
