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Our daughter Hannah was born with 2 very rare diseases 1 called C.A.H
and the other called Spinal Muscular Atrophy, which works to rob her
of her ability to move, breath and, eventually, live. There is a drug
that can stop this disease. It has just approved it. But accessing it
costs $140,000, and the process of our drug plan does not cover it as
of yet. It could be years before it is covered and that’s a years that
our little girl can’t afford to wait. It would be years of
vulnerability and loss.
But with your help, we believe we can
turn 2020 into a year of miracles!
Let me tell you the rest of
our story.
Spinal Muscular Atrophy (SMA) has become our daily
life. It’s the genetic condition most likely to kill children under 7
years of age, and our daughter has it. It’s a progressive lower motor
neuron disease, that is loosely paralleled to adult ALS. But there are
significant differences: most notably, SMA never affects cognition, so
our daughter is as bright and keen as any other child her age.
At 14 months, Hannah took her first 3 steps. She has never walked
since then. After those first steps, she lost any strength to walk,
then strength to pull up to stand, and then the strength to crawl. She
can barely get from a lying position to a sitting position. Hannah is
our mature little scholar! But she is completely dependant on us for
dressing, toileting, and getting her in her wheelchair.But those
things aren’t the worst. She is at an extreme risk of respiratory
failure. Every single simple cold/viral infection is a threat. At
least three times a year these infections strike hard enough to send
her to the hospital. As a parent, I weep and get nauseous just
thinking about this. I don’t want to think about what the next year
could hold for her.
But the amazing thing is that it doesn’t have
to be that kind of year for our little girl.
For over two decades
the gene responsible for SMA has been known but there has not been a
single available treatment. This past summer the first drug in history
to specifically treat SMA was approved ! It is called Spinraza
(Nusinersen). It can completely halt SMA in its path and even lead to
some GAIN in muscle strength!
This drug truly is a miracle, and
we need our daughter on it as soon as possible.
Though it’s
approved Spinraza won’t be available on our drug plans for years. It
costs $140,000 to provide a year’s supply for Hannah 3 vials . The
manufacturer, Biogen, will sell it directly to families willing to pay
for it.
This treatment WILL stop Hannah's respiratory deterioration, keep her
hands strong, and prevent future problems in her spine that would
require surgery.And we don’t even know what gains it might provide.
Instead of a year of atrophy it can become a year of miracles! But we
need your help. We do everything we can for our little girl but we
can’t do this alone. We need to raise $140,000.
Please join us
on our journey and help to make this a year of miracles for Hannah
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