Imagine being the parents of two beautiful children only to learn that BOTH were diagnosed with a devastating genetic disease.
This is the reality faced by Don and Jillian Arnold and their beautiful children Roman (2 1/2) and Stella (16 months) who were both diagnosed with a devastating ultra-rare genetic neurological condition called Niemann-Pick Type A that will cut their lives short unless a treatment can be developed in time.
Don and Jillian are not alone. Other families with children born with this ultra-rare disease are also desperately keeping HOPE alive that a treatment will be developed to SAVE their children. These children URGENTLY need us to work together to raise the funds needed to accelerate a gene threrapy treatment that has the potential to save their lives.
The promise of gene therapy is real and the potential curative nature of the treatment is delivering HOPE to families like the Arnolds. But, gene therapy is also very expensive. And, to make it worse, because this disease is so rare, pharmaceutical companies often do not prioritize the development of programs like this with such small disease populations. Because of this, too often the development of treatments for ultra-rare childhood diseases lag behind and children suffer.
So, it is up to us to step up as a community to rally around these beautiful children and share their story in order to fund the cure.
The only thing standing in the way is MONEY.
At Columbus Children's Foundation, we use a nonprofit model that has science at its foundation and compassion at its core. We support programs that will accelerate the development of treatments for children with ultra-rare diseases. We can only do this through the generous contribution of our donors large and small.
It is the best of humanity when we all come together to help those who need it most. This is one of those times and we NEED YOUR HELP to raise the funds to advance this life-saving treatment!
It will take all of us to make this cure happen so one day kids like Stella and Roman will be able to walk on their own and even enjoy the taste of ice cream just like other kids their age!
Can you help us Save Roman and Stella?
#ShareYourRare #columbuschildrn #GivetoHelpThemLive