Hope Matters

Additional Information

I am writing you this letter to ask for your help. I am hosting a benefit for two amazing children. They are special needs children who have a rare genetic mutation that they share with one other family in Switzerland. They have health issues that are impacting their life.
Both kids have kidney failure. Alissa is 17 and diagnosed with end stage 5 renal failure and her younger brother Dylan is 12 and was just diagnosed with stage 2-3 renal failure. Alissa, was just put on the kidney transplant list, to get a new kidney to give her many more years to live. Her brother Dylan will eventually need a transplant as well. This family also had another son with renal disease 2 years after having Alissa. Unfortunately, this little boy did not make it past seven months old because of a more severe heart defect.
They must travel out to Syracuse a lot for doctor appointments. While waiting for a transplant, you must be on call 24/7 to pick up and go as soon as one is available to you. After you receive a transplant you must see a doctor a couple times a week. Which for them is hard because they do not live in Syracuse so they must travel. Also, there is medication that she will be on for the rest of her life. The benefit is to help with the cost of traveling back and forth to the doctors and the hospital and any medication that insurance does not cover. They have had surgeries on their eyes. Alissa has had other surgeries on her heart, back, and stomach. Both kids are nonverbal, incontinent and are autistic on top of everything else.
Both children are full of energy and just love life. They have an infectious smile and laugh. They can brighten your day with one of their smiles. These two are amazing and deserve the best that life has to offer them. Even though these kids have health issues many days you would look at them and not even know that they are sick. Their energy is amazing and their love of life is truly amazing.
The benefit will be September 23, 2017 at the Stittville Fireman’s Field From 1 pm to 5 pm. This is a kid friendly event. Thank you for your time, any and all donations would be appreciated.
Thank you,
Michele Wilson
315-717-8190