My daughter Mila is Olivia's same age, therefore this petition comes from a dad's love for his own daughter and the hope that our children grow up healthy and are able to live an autonomous life.
Olivia's parents have gone through many obstacles and have spent their savings trying to get access to the care she needs in the United States. However, accessing the proper care seems far away due to the extremely high cost and the fact that they have been denied financial help because they are not U.S. residents.
Many fundraising events have been organized by their family members and friends back in Chile. They were successful in raising the necessary amount of money they needed for the first part of the treatment, assuming they would be granted access to it in the U.S. Having said that, now they find themselves in a much different situation and this is the reason I ask for everybody's support and generosity.
Time is of essence, but I know it can be done. I appreciate you taking the time to read through the following words her parents wrote.
Hello, we are Francisca and Matias, parents of Santiago and Olivia Court. We wanted to tell you the story of our little daughter Olivia that today’s needs your help more than ever...
In March 2015, Oli was diagnosed with Spinal Muscular Atrophy (SMA) Type III when she was 1 year 5 months age. SMA is a genetic condition which affects the nerves that control muscle movement – the motor neurons. Children are usually diagnosed with SMA type 3 between 18 months of age and early adolescence. They are able to stand and walk, but may lose this ability later in life (actually Olivia started to walk at 11 months, but unfortunately, she needs today a wheelchair to move independently).
December 23, 2016 was an historic day for patients with SMA, as FDA approved the first treatment for kids with this genetic condition that could help stop this disease for Olivia and hopefully recover part of what has been lost. The big problem we have is that with such a great news, it also came with a huge cost of 750K first year (6 injections), and 500K for the following years (4 injections each year). This means possibilities to access this treatment are limited to the health insurance, and in our case it’s nearly impossible as we can’t access an insurance in the United States because we are not U.S. citizens, and unfortunately our local insurance does not cover any drug that is not yet approved in Chile (which is our case).
As we need this to happen now because we can't afford to lose more time, we decided to bet on this and fight for this possibility… it’s a lot of money, but we know that with a small help of everyone, we can make this happen!
Thank you very much for your support and for share our story with many others…
- Maria Ehlers
- Chicho Rey
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- Whitney Horrigan
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