My nieces children were born with Cystic Fibrosis. Anyone who sees them would think they are normal, healthy kids but this is the deceptive side of CF. Most of you know what Cystic Fibrosis is, but for those that don’t, it is a genetic disease affecting the secretions in the body. The lungs (breathing) and the pancreas (nutritional absorption) are the most commonly affected organs. Most people with CF have a shortened life span depending on the severity of the disease.
JuNo’s Ark used to be called Noah’s Ark when our nephew Noah was born with CF in 2014. When Julia was born in 2017 we found out she also has CF, so we reinvented our CF team’s name to be JuNo’s Ark (Julia and Noah). We are proud supporters of this worthy cause and the money we raise for the CF Foundation goes directly towards research. Do you know that CF research is solely supported through donations from individuals like you and I? The CF foundation does not receive any federal funding for research towards new drugs and treatments. I know many people are skeptical of how research dollars are spent but here are some of the highlights of what CF research has brought to our grandchildren:
• Noah and Julia are now on medicines that will stop CF damage in its tracks. What does this mean? It means they hopefully can look forward to a long life, not the early death sentence people with CF are dealt.
• CF kids usually spend on average 5-7 hospital stays a year due to CF complications. Some of these stays can be weeks long. Due to advances in research and drugs, to date, Noah has never been in the hospital and Julia has had one overnight stay this year. This is huge!
• Their CF doctor at the Cleveland Clinic has told us the cure for CF is on the horizon. He told us his job is to keep Noah and Julia healthy enough to benefit from the cure when it comes. Once the damage is done to the lungs, pancreas etc., it can’t be reversed. But by preventing the damage through drugs and treatments, it keeps them healthy till the cure is found.
• They require daily care on a good day, it takes 3-4 hours to do their treatments, medicines, sterilizing equipment etc. If they are sick the time required can increase to 6 or more hours a day. This is a full-time job. All of this needs to be worked into a daily schedule of school and work. Could you do it? Hopefully through the research your donation makes possible, new medicines and techniques will be discovered that can help with this daily burden. Through research they will hopefully be able to lead a more “normal” life.
Please support me!
We are at a pivotal moment in the history of cystic fibrosis and your support matters. Your gift will help add tomorrows to the lives of people with cystic fibrosis by supporting groundbreaking research and medical progress towards a cure. Please help me reach my fundraising goal!