Help for Loui Legend
Donation protected
RubixVT is raising money to help a lovely boy, called Loui Legend.
Loui is a brilliant, loveable and funny boy who was born with a cruel and life-changing condition called Treacher-Collins Syndrome (TCS). TCS varies dramatically in severity and Loui, unfortunately, has a particularly severe case.
The list of symptoms that Loui lives with is exhausting. TCS affects the development of the bones and the tissues of the face. Because of his receded chin he needs a tracheostomy to breathe, a gastrostomy in his tummy to feed and two bone anchored hearing aids (BAHAs) on a band around his head to hear. He has no middle or outer ears and underdeveloped cheekbones. His cleft palate was so severe that four different NHS doctors described it as inoperable.
He has endured multiple operations and faces many more.
Yet he retains a cheeky and cute persona, which charms everyone who meets him.
Mum Karly says, “I know I’m a biased mum, but he goes through so much for a little boy of his age with such a spark and smiles about him that I feel he is so deserving of this level of adoration.”
Karly and dad Luke, have dedicated every waking hour to care for Loui. Karly says, “Having a tracheostomy which is a direct route down into his lungs and bypasses his voicebox means Loui cannot speak, eat, drink, play in sand or water or ever be left alone.
“Loui has to have somebody by his side 24/7 to ensure he doesn't pull or itch his tracheostomy out as without it he also cannot breathe. We have had several emergency situations when Loui turned blue and we feared we were close to losing him. Myself, Loui’s Dad and my mum are trained in CPR and all Loui's medical needs.”
Much of the medical help that Loui needs is not available on the NHS.
The family found an ex-NHS surgeon miracle worker, Dr Sommerlad, who has performed three surgeries on Loui’s palate. Dr Sommerlad kindly waived his costs, but the family still had to pay for the NHS theatre and bed at the price of £12,500.
The next major operation Louis needs is a subcranial rotation jaw distraction that will be carried out in America at the Seattle Children’s Hospital. It costs an eye-watering £214,000 but has had a 100% success rate in removing the tracheostomy in severe TCS cases.
If successful, it would allow him to breathe unaided, talk to his family and friends, eat food, drink drinks and not require 24-hour care. He would be able to play in the sea and sand, and take part in a multitude of other activities that people take for granted. It would transform his life.
Loui is a wonderful, bright child - and we are determined to help him live a better life.
Loui is a brilliant, loveable and funny boy who was born with a cruel and life-changing condition called Treacher-Collins Syndrome (TCS). TCS varies dramatically in severity and Loui, unfortunately, has a particularly severe case.
The list of symptoms that Loui lives with is exhausting. TCS affects the development of the bones and the tissues of the face. Because of his receded chin he needs a tracheostomy to breathe, a gastrostomy in his tummy to feed and two bone anchored hearing aids (BAHAs) on a band around his head to hear. He has no middle or outer ears and underdeveloped cheekbones. His cleft palate was so severe that four different NHS doctors described it as inoperable.
He has endured multiple operations and faces many more.
Yet he retains a cheeky and cute persona, which charms everyone who meets him.
Mum Karly says, “I know I’m a biased mum, but he goes through so much for a little boy of his age with such a spark and smiles about him that I feel he is so deserving of this level of adoration.”
Karly and dad Luke, have dedicated every waking hour to care for Loui. Karly says, “Having a tracheostomy which is a direct route down into his lungs and bypasses his voicebox means Loui cannot speak, eat, drink, play in sand or water or ever be left alone.
“Loui has to have somebody by his side 24/7 to ensure he doesn't pull or itch his tracheostomy out as without it he also cannot breathe. We have had several emergency situations when Loui turned blue and we feared we were close to losing him. Myself, Loui’s Dad and my mum are trained in CPR and all Loui's medical needs.”
Much of the medical help that Loui needs is not available on the NHS.
The family found an ex-NHS surgeon miracle worker, Dr Sommerlad, who has performed three surgeries on Loui’s palate. Dr Sommerlad kindly waived his costs, but the family still had to pay for the NHS theatre and bed at the price of £12,500.
The next major operation Louis needs is a subcranial rotation jaw distraction that will be carried out in America at the Seattle Children’s Hospital. It costs an eye-watering £214,000 but has had a 100% success rate in removing the tracheostomy in severe TCS cases.
If successful, it would allow him to breathe unaided, talk to his family and friends, eat food, drink drinks and not require 24-hour care. He would be able to play in the sea and sand, and take part in a multitude of other activities that people take for granted. It would transform his life.
Loui is a wonderful, bright child - and we are determined to help him live a better life.
Organizer
Rubix VT
Organizer