Hoping you can help my dear friends get the medical attention their little boy needs. Even the smallest donation will help. Simon's parents are some of the most generous people and now need help to pay for the medical treatment their little Simon needs.
Simon Jay’s Journey
Simon was born in March 2013 what we thought he was perfectly healthy despite a very complex pregnancy. The following weeks led to serious concern as he was not eating or growing, and losing weight. He was sleeping upwards of twenty hours a day. At one month of age, he was admitted to the NICU for Failure to Thrive.
Almost two years later, two less jobs, over a dozen hospital stays, and a multitude of testing later and we still do not know the diagnosis. Simon still does not eat on his own. He underwent surgery to place a feeding tube in November of 2013. He has also been receiving occupational therapy, speech therapy and feeding therapy over that time and has made major strides since. He has grown, he has been passing all of his milestones, and he is the happiest and most rambunctious little boy you ever knew. As great as that is it is make his case that much more complicated, medically and financially.
All of Simon’s tests have come back normal, so the doctors are at wits-end in regards to diagnosing the problem. This has actually made his treatment more difficult to procure as their insurance has often declined coverage for the developmental services due to the fact that he does not have a diagnosis. The other result of not having medical diagnosis is that they are treating this as a behavioral issue and have referred Simon to intensive feeding therapy to get him off his feeding tube and eating properly. His goals are simple: to feel hunger, to swallow normally and to eat enough food to sustain his own life.
The Intensive Feeding program Simon has been referred to has an 89% success rate at helping children survive without a feeding tube. However, the 6-8 week program is in Indiana which means the family will need to travel and live in in a Ronald McDonald House and incur devastating medical expenses. RMH is a great help but doesn’t assist with the high medical bills the family will incur to help Simon have a fighting chance.
Simon’s mother quickly realized the difficulties that come with feeding tubes and saw the many children dealing with the agony. To help offset some of the financial burden her and her husband were dealing with she started a business making feeding tube covers. These covers eliminate the need for the gauze and tape that irritate babies’ skin. I hate ripping the tape off my skin I can't imagine doing that several times a day to a baby! The need is so great she donates as many covers as she can and accepts donated funds to send covers to other families that can't afford them. The website is www.adorabellydesign.com.
How can you help?
Donations are greatly appreciated through this website and will be used to pay for the Intensive Feeding Therapy. The waiting list is long but Simon's doctors have fought to get him in the program as soon as possible. He is at a fragile state as he continues to lose weight and is not growing.
I personally thank you for your donation and wish you all the best!
- Shanna Harless
- elizabeth cassidy
- Joseph Fetzer
- Greg Switala
- angie byerly