Grantham family to host ball to highlight daughter's rare condition
The family of a young girl, who was born unable to swallow, will hold a fund-raising ball to raise awareness of her extremely rare condition.
Grace Scott was just two days old when she was diagnosed with Tracheo-Oesophageal Fistula (TOFS), a rare congenital condition that affects just one in every 3,500 babies. Children with TOFS are born with an incomplete oesophagus and are therefore unable to swallow at birth.
Grace’s mum, Rachael Scott, of Thorneydene Gardens, Grantham, said: “Shortly after bringing Grace home from hospital, we realised that she couldn’t feed properly. She then began coughing up old blood and her breathing was laboured with chest recessions.”
After being rushed to Lincoln hospital, doctors conducted several tests thinking that it was an infection until they tried to put a feeding tube down and realised that they couldn’t. An X-ray revealed that Grace’s oesophagus connected to her lungs instead of her stomach.
Rachael, 31, who also lives with husband Simon, 32, and son Joshua, 7, added: “Any goodness that she was taking in meant that it was going straight into her lungs. In short she was born unable to swallow.”
After being transferred to Leicester Royal Infirmary, surgeons managed to stretch the oesophagus to connect back to the stomach and close off the connection to her lungs, during an operation when Grace was just three days old.
Grace spent the next three weeks in recovery in children’s intensive care and high dependency until she was able to begin oral feeds.
After returning home, Grace, who will be celebrating her fifth birthday on Thursday, has continued to take medication to help her cope with the side effects, including chest infections, which has resulted in several stays in hospitals, reflux and ‘stickies’ – when food gets stuck.
Rachael added: “We are currently waiting for an operation to help with her reflux, called a nissens fundoplication. Her oesophagus isn’t growing as well length wise so her stomach is rising higher into her chest, so therefore any acid is coming straight into her oesophagus and causing a number of different symptoms including sickness and inflammation.”
But despite her incredibly tough start in life, Grace, who is in reception class at Gonerby Hill Foot School, never ceases to amaze everyone around her with her confidence and laid back character.
Rachael added: “Grace doesn’t let anything bother her. She knows no different. She is very confident and so fun and loving. She loves swimming, dancing and playing with her friends and big brother.”
Rachael and Simon will be hosting a fund-raising ball to raise awareness and much needed funds for TOFS later this month but it is not the first time that the doting parents have fund-raised for the charity.
They hosted their first ball in 2016, managing to raise £2,600. Simon also took part in his first London Marathon in April 2016 in aid of TOFS.
Tickets for the ball at Barnsdale Lodge, Rutland Water, on Saturday, May 26, cost £40 per person, which includes a two course dinner, photographer, live band, raffle and auction. They can be purchased by calling Rachael on 07720 536882 or email: thescotts22@icloud.com
TOFS is a registered, UK-based charity dedicated to providing emotional support to families of children born with Tracheo-Oesophageal Fistula, Oesophageal Atresia and associated conditions.
For more information about TOFS, visit: www.tofs.org.uk
