‘Lewis’ Chest Brace’ to correct Pectus Carinatum!

LEWIS' STORY - Lewis has had a troublesome life so far, he was born with mild pulmonary stenosis which fortunately he has now grown out of and at the age of 9 days old he suffered a convulsion fit which was triggered from contracting the virus Streptococcal B during birth then following on from that he has had to have various operations and procedures. When he was undergoing various tests the consultants at The Royal Brompton Hospital confirmed that he has a 16P 11.2 micro deletion chromosome relating to various disabilities which Lewis has had to live with up until now. At the age of 10 years old Lewis was diagnosed with a rare deformity called Pectus Carinatum (otherwise known as a pigeon chest) on 2nd December 2013.  He is now 5ft 11 tall and continuing to grow  taller (hense the stretch marks on Lewis' back)...as he reached early teenage years we noticed his chest started to protrude outwards and his consultant explained that his sternum had moved over to the right, as you can imagine as Lewis's parents we became very concerned.  The GP confirmed he has slight curvature of the spine also his left rib began to stick out, Lewis was referred to see a consultant at the Royal Brompton Hospital again on 27th February 2019 who also confirmed that his Pectus Carinatum needs attention, his options were to have surgery a procedure called The Ravitch Repair which entails a very invasive operation - braking his ribcage and removing the cartilage, reshaping the breastbone and correcting his chest shape, however this is not possible until he is 17 years old, and not guaranteed to stay in shape due to continuous growth spurts throughout Lewis's teenage years. Alternatively, Lewis was offered a chest brace treatment which is not available on the NHS!!! He will have to wear the brace for possibly 12 months and for the first few months continuously 24 hours a day 7 days a week. After the initial consultation Lewis will need to have his chest manipulated into place, it will be an on-going assessment as he may also need a separate brace to correct his rib flaring too.  This is a 1-year programme which includes follow-up appointments throughout and continuous reviews of the bracing. The clinic is held every 3 months and as Lewis is 1 in 1500 children that suffer with this deformity a specialist from America will make a custom made brace to Lewis' specific requirements, but all this comes at a very heavy cost for us and so...…
Here we are at a point in our lives where we are reaching out to ask for desperate help to raise the sum of £3000 which enables our 14 year old teenage son to have the bracing treatment within the next few months, he is due to attend his first consultation on July 12th 2019, as Lewis grows his deformity will get worse and he could possibly end up with defined curvature of his spine due to the shape of his chest . Lewis has always been self-conscious of how his upper body looks, he has to cover his chest during the summer months and is very embarrassed about having to take part in school swimming lessons or any physical education. We feel that our sensitive young teenager will benefit immensely from having the bracing treatment physically and psychologically and ask if you can help us make this possible for him as every penny will help!

We are truly grateful from the bottom of our hearts, Thank You for reading Lewis' Story! xxx