Hannah's 2nd round of treatments
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 but accessing it costs $350,000
and our drug plan does not cover it as of yet. It could be years
before it is covered and that’s years that our little girl can’t
afford to wait. It would be years of vulnerability and loss.
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
dependent 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. 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 plan for years. It cost $350,000 to provide
Hannah her treatment.
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 your support.
Please join us on our
journey and help to make this a year of miracles for Hannah
