Dear friends, family, and kind-hearted strangers,
We are reaching out with a hopeful spirit to ask for your help for our son, Kyler. He is 1 year old, loves to smile, and brings so much light into our lives every day! He has 1 big brother, Kayson 8, and 1 big sister, Maleigha 5.
Kyler has been diagnosed with a rare, severe, and progressive genetic disorder called Alpers-Huttenlocher Syndrome, which is a mitochondrial disease.This condition causes frequent hard to control seizures, low muscle tone, developmental regression, liver disease, and more. Currently, there is no cure, and it is a terminal disease. However, there is hope: a promising trial drug is showing real potential to slow the progression of this devastating disease.
Unfortunately, this treatment comes at a cost beyond what we can manage alone. Insurance does not cover the expense of the drug, as we will be receiving it as compassionate use. It has been in trial for a few years in Canada.
This is where we humbly ask for your help.
Your donation, no matter how big or small, will go directly toward:
•Covering the cost of the trial drug
•Travel expenses down to Riley for appointments and continuous testing
•Additional medical care and supportive therapies
Every dollar brings us one step closer to giving Kyler a chance at the healthier, happier life he deserves!
If you are unable to donate, sharing our story helps immensely. Your prayers, good thoughts, and support mean the world to us!
Thank you from the bottom of our hearts for standing with us in this fight.
With love and gratitude,
The Rupright Family
Here is the information on the drug. This is from the beginning phases, but it is further than that, just not yet published yet.