Every year for the past 4 years I have tried to do something in order to help raise funds for TOFS, whether it was the teddy picnic walk or through birthdays, I ensure I do it every year, TOFS helps people like myself with all the information someone would require and help they need, they have leaflets for GP's , schools and parents as well as merchandise for parents. This year I have decided to do the virtual London marathon run. All of this is for my son Blake who was born a TOF/OA. At only 2 days old he had to have surgery and spent 11 days in NICU. After only a few weeks at home he started vomiting after every feed, and then he stopped breathing and had to have CPR. In hospital they thought it was bronchiolitis and sent us home after 6days of iv fluids and antibiotics. a couple of days later he stopped breathing again and had to be blue lighted to hospital. He had a contrast which had shown his esophagus had closed and required a balloon dilatation, since then he has had 12 balloon dilatations and ended up having a fundoplication and now Blake has been referred to a gastrologist, he still wakes up at night 14 times crying in pain. He has food difficulties, still on small bite size/blended food diet, he requires constant supervision at all meal times. He has an educational care plan due to his complex needs, he requires one on one help during school hours, and may not be able to attend a mainstream school, he is showing high signs of autism and is now requiring tests. He has speech delay and difficulties, and struggles with infections more severe than the average child his age, last month he was diagnosed with a chest infection and ended up seriously ill for 3 weeks, he had 3 lots of antibiotics and a dose of steroids during this time, he saw the GP 3 times, had to call 111 3 times, went to a&e and also the wellness center out of hours. We have been told he has another stricture and needs a sleep study. He has a 'floppy' airway which called tracheomalacia, this causes him to have breathing difficulties and causes blue episodes. Blake struggles day to day with his condition but never shows it. He carries on just like we do as a family. The money we raise can help get information that we didn't have. so for people who are supporting myself and my family and for people who are donating in order to raise funds for this amazing charity that helps spread awareness about a rare condition, I thank you all with my whole heart. xx
