Meet Carter-Lewis he has just turned 5 if you know him you know he is one of a kind, brave and a very brave boy. Every day is a fight as sadly he has Shone complex which is a rare congenital cardiac malformation characterized by a complex of four obstructive lesions of the left heart: supravalvular mitral membrane, parachute mitral valve, muscular or membranous subvalvular aortic stenosis and coarctation of aorta. Carter had his first open heart surgery at the age of 2. They did coaction of the aorta, removed the obstruction in the sub aortic. We are now moving on to his 7th open heart sugery.

Sadly Carter’s health has deteriorated and the family have recently been given the news that he has been declined a heart transplant due to the severity of his case as well as the chances of him getting one at his age/size and blood type would be highly unlikely as well as the fact he is at such high risk. There is a light as Carter has been given the chance of a last attempt surgery which is his 7th open heart surgery to remove the whole sub aortic area. This also means that he would need his aortic valve replacing. As he already has a mechanical mitral valve this means they can not use another so they are planning to take his pulmonary valve and Use it in place of his aortic valve then to use a deceased donor homograph valve in place. Due to this he will 99% need a pacemaker after this surgery. This is huge news for Family but as you can imagine extreamly scary, as Carter last year suffered a cardiac arrest and the year before also had two cardiac tamponards as well as fighting sepsis and Chylothorax.

There has been no date and they are currently in limbo awaiting a date, all they know is it is they are trying to get it done ASAP. At this moment in time the only thing that is letting the surgery go ahead is that his lungs are still healthy. They gave him three months in June so this time is nearly up, his team are looking to complete In September. Carter has previously spent many weeks in hospital the most being 8. This means we are away from home and the rest of the family for this time as I do not leave him.

The family have despratly been trying their hardest even with the current COVID 19 situation to save as much as they can towards accommodation, travel expenses, food as well as home bills and day to day living for the children at home. They are also trying to prepare for the older 3 to go back to school needing new uniforms. There eldest is starting senior school which mean so much more equipment plus a bus pass costing nearly £600 a term to get her to and from school. The family are also trying desperately to prepare Carters siblings, making as many memories before he goes back into hospital. I‘m sure you will completly understand this is always extremely daunting and scary for them. They worry that this could be the last time they hold his hand or even say the aimple words “I love you”. While there beother is in hospital the other children get split up to stay with friends and family as they are jot allowed to stay at the hospital with him which again is very upsetring for them. Sadly while GOSH does have a charity house as im sure you can understand this still cost and can also be booked out, they also have to pay for food and other essentials plus anything there ofher children may need back home which with Covid-19 may have to be childcare during the day as schools are not open. If there is anything you can do do help big or small would be greatley apprdciated to help them have one less worry financually so they can have the strength to help Carter get through this super invasive surgery so he can come home soon with his loving smile and beautiful personality. No one should have to go through this let alone a 5 year old little boy who just wants to enjoy life and play and be a normal little boy who loves marvels and toy story plus his family dearly.

So 2 weeks ago we enjoyed a lovely day celebrating Carters 5th Birthday, die to the current situation sadly a party was out of the question but this did not atop the family wanting to make it very memorable. They arramged a drive by so his friends and family not in his bubble could come pass and say happy birthday, he was desprate to see some of his little friends from school as he has been sheilding since March.

What came next was just outstanding a biker group got in touch as they had heard about Carter amd what was happening and they asked if they could do a ride by amd present him with his very own T-shirt making him part of there family. The Rising sun rider were super friendly and spent a good couple of hours chatting away answering the childrens questions and the parents lol.

They then had a visit from Angies ice cream van who stayed as long as she was needed giving all the children desert and an extra special on to the birthday boy.

Carter is a super Marvel fan so when spiderman came to visit with a special gift Carter was made up. Bret Owen has so much paitents he allowed all the children to have there photo taken with him, keeping to the Government guidlines and social distancing and teaching them all his spidey moves.

A fire engine even came and hamded out stickers sadly they were not allowed to let the children get on the engine due ro Covid-19 but they handed out stickers and put there siren on for him.

The local egg man and his wife who knows Carter from being his suport teacher came back from there holiday for the day to say happy birthday. They have been making special deliveries to the family during lockdown so Carter can have fresh eggs for his breakfast or so he can bake cakes.

The day was beautiful with so many memories which ended with a BBQ with all his bubble.

let me take this opotunity to say a massive thank you to everyone who has or will help you will never truely understamd how much you are helpping this family at such a difficult time.