Support Tommy Weaver's Recovery
My name is April and my husband Tom and I are the proud parents of two boys with Down Syndrome, Tommy and Mark. On January 17th, our world got turned upside down when our oldest, Tommy, collapsed on the floor. My husband Tom and I, had no idea what was wrong, but what we knew for sure was that he needed medical attention. Living two blocks from our community hospital, we put him in the car and drove him to the ER. Once there it was determined that he would need to be transported by ambulance to the children’s hospital in London. They fought to stabilize him for transport which included intubating him and putting him on a respirator. Within hours, he was undergoing what would be the first of 7 major lifesaving surgeries, that he would have in a 7 month time frame. For reasons nobody can explain, Tommy bowels twisted around themselves, cutting off blood supply to every part of his body. This caused him to become septic, which was why he collapsed. For the first several weeks, Tommy was fighting for his life with either myself, or my husband by his side every minute. As a result of damage done to his intestines, Tommy lost 90% of his small intestine and 1/3 of his colon. He has had multiple procedures done in an attempt to stretch a complete blockage of his esophagus, which was also the result of the sepsis. Tommy’s most recent surgery was on July 14th, where they repaired a stricture in his stomach that was causing him to wretch and spit up multiple times a day. Tommy’s life is now dependent on a TPN (Total Parenteral Nutrition feeds) for 16 hours a day and a tube feed for 24 hours a day. A young man that was once independent in so many ways, is now dependent on the 24/7 support of medication and nursing support. Tommy now has an ostomy that he, in all likelihood, will not be able to manage independently, furthering his dependence on others. As older parents, my husband and I are both retired, so caring for Tommy 24/7 will be our full time job for as long as we are able, however, the costs we have incurred over the last 7 plus months, most of which were spent in hospital, was not something we could have planned for. Paying for parking, paying for gas to get back and forth to hospitals and private room charges(London and currently McMaster Children’s Hospital) have left us in a place where we find ourselves struggling financially. My husband’s military benefits will only cover Tommy’s medical expenses to a certain extent. Tommy has been at McMaster’s Children’s Hospital since June 12th where we will be required to pay a $35/day charge for a private room. While a private room may seem like an extravagance, for Tommy it is a necessity. Children with Down Syndrome are more likely to contract upper respiratory illnesses and with COVID, this was a very real concern for us as the parents of a child who was fighting for his life. This life changing event has caused many stressors for us a family: financially, emotionally, mentally and coordinating caring for Tommy in hospital while still proving 24/7 care for our youngest son at home who has Down Syndrome and Autism. Please consider donating to our GoFundMe campaign to help us support Tommy and his current and future medical needs.
