I am starting a campaign for DEMIR ALI. Demir Ali was diagnosed with the disease “spinal muscular atrophy”. Demir Ali has to receive a genetic therapy called Zolgensma and that costs 40.000 dollars
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Demir Ali is almost 16 months old, meaning that we are
literally having a fight against the clock. He must receive his treatment in
the United States. Below, you can find the story of Demir Ali and his family.
Your donations will be greatly appreciated. This campaign is dedicated
exclusively to Demir Ali.
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When you find out you're going to be a mom, everything
changes. From that moment on, your life will be completely different, and you
start worrying about being able to ensure a good life, a good academic
education, the best environment and a more comfortable and safer route
throughout the life of your child. And you do it with an unconditional love and
you are excited to think about the precious and unique moments to enjoy with
your baby.
You give birth to your baby and the doctor leaves it in your
shaking hands. It is the best feeling in the world. The first contact makes you
immediately a natural teacher to handle everything that scared you before for
lack of experience. You start feeling more secure and safer. And the more you
share something with your baby, the more you enjoy being a mother. You already
have the answer instinctively of all the questions that you had when you were
pregnant. And now is the time to grow together with your baby, cry together,
laugh together ...
But at one point, even if you have no idea what is happening,
something happens, and time starts to run in the wrong direction. And that
moment all your future plans are shattered, motherhood already has another
dimension and your sweet dreams are replaced by a tremendous concern. Because
your son is diagnosed with a rare disease: Spinal Muscular Atrophy.
At first you don't want to believe it. Your heart is broken.
You blame yourself because you have brought it into the world. Your baby is
innocent. On the one hand, you die of regret, your soul hurts, you have the
words drowned in your throat but on the other hand the doctors keep telling you
that your son has to start his treatment immediately. Because every moment, a
motor neuron dies.
Spinal Muscular Atrophy (SMA) is a neuromuscular disease,
which is manifested by a progressive loss of muscle strength that affects the
ability to walk, swallow and breathe. And it is the first genetic cause of
infant mortality. It is caused by a mutation in the survival gene of motor
neurons 1 (SMN1). This gene is responsible for the production of a protein that
is critical for the nerves that control our muscles. Without this protein,
these neurons cannot function properly and die at any given time.
Our son Demir Ali is 16 months old. And there is a genetic
therapy called "Zolgensma" approved by the US Food and Drug
Administration (FDA) for children under 2 years old with a price of € 1.8
million Euros. Donations to be collected along with other costs of
treatment amount to € 2.1 million Euros. Zolgensma is designed to replace the
missing or defective SMN1 gene with a functional copy that produces the SMN
protein, thereby improving the function and survival of motor neurons. It seems
that Zolgensma can save lives of those who are lucky enough to get it with a
single dose treatment.
Today Demir Ali can't stand or walk. Unfortunately, we don't
have a second to lose. We imagine him walking, running, playing with his
friends and we want him to be an active part of society, feel proud of himself
and have a long life.
We, as his parents, without knowing that we are carriers of
this disease, are broken, it is hard for us to breathe, say something or think
... We need the support of volunteers who can help us during this fight and
donate motor neurons for our little son. We hope that Demir Ali is one of
the lucky patients to receive this treatment.
If you want
to help us save Demir Ali's life, you can support us with a donation
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