Help give this 9 year old boy his life back

We are raising money for a very deserving 9 year old boy and his family to get him back to health and help take the pressure of the family at this time. Please read the amazing story of Carson and his families fight to get him well.

Carson was born in 2013 as twin 1 of identical twin boys. Shortly after birth both boys became extremely unwell resulting in both being in Bristol PICU. Carson’s lungs had collapsed, it was touch and go for him and so many times we were told to prepare ourselves to lose him, and his twin Hunter has a congenital heart defect, his journey later took him to Leicester’s Glenfield Hospital and a treatment called ECMO.

Sadly, Hunter passed away shortly after, leaving Carson his surviving twin. At 11 months old Carson appeared, at first, to have something that looked like a spider bite (just to the left of his left eye) which was treated as such. It reappeared a few months down the line and again, and again for years with no doctor able to explain what was happening to him, it would raise his temp which resulted in seizures, long hospital stays and invasive treatments to try and understand what was happening to this little boy.

Finally in 2019 there was some answer’s that it was a virus that lived in a nerve ending in his face and for no rhyme or reason would attack, causing mass swelling around the left side of his face, into his eye and make him very poorly. Carson is a usually very active 9 year old boy who plays rugby and enjoys altheltics so during the summer of 2022 Carson’s health rapidly declined to include crushing headaches which stopped him from functioning (Opticians were of the opinion his eyes were fine, only ever so slightly long sited and only due to the headaches he was given glasses to try), then came the nose bleeds… Bleeds that took hours to stop, made him very distressed and shaky, clots the size of 50p’s – family will forever be traumatised at what they saw.

ENT did their tests and have cauterized one nostril with the second due before Christmas. Then his appetite went, he started to lose weight making him look very frail. His energy was always zapped. Carson is on the Autism Spectrum and doesn’t sleep more than 2-3 hours a night, so him sleeping was a symptom of feeling so drained, overall during the later months of 2022 Carson just stopped being Carson.

Oct 2022 severe pain in his lower abdomen saw his parents take him to A&E where they thought naturally it was appendix, but blood tests showed otherwise at that point told in 4 weeks repeat testing was required.

Still at this point he was having crippling headaches, low energy and weight loss. The scariest of all symptoms started to appear, Carson was losing his cognitive abilities, his left side of his body would give way and would have no power to move, walking would leave him crying in pain with his legs. He was falling over at home and in school for no reason.

The decision was made to hire a wheelchair as a precautionary measure to help avoid falls. Carson’s school cannot be thanked enough for their outstanding approach to his care, they went above and beyond being “just” teachers, they made sure Carson was involved in everything as a normal pupil and if he was unable to, they made sure there was an alternative plan.

5 weeks later at those repeat blood tests, the amazing Dr’s at Glangwili could see that Carson had declined. The pain now crippling his body, his bones protruding, he wasn’t reminiscent of a healthy 9-year-old boy. 9 days in the hospital for treatment, tests and scans and when looking through his MRI that is where they found an abnormal growth in the frontal lobe of Carson’s brain which broke our hearts (Carson had a prior MRI in 2019 with no abnormalities, which showed that this growth was a new mass in his brain)

Noah’s Ark, Cardiff & Glangwili then worked together to make a plan for his future as right now we don’t know what is causing what. They have said that the next few months of Carson and his family’s life are going to be agonizing with the stop start of finding out how it’s growing, what it is doing and all the questions we have no answers too.

Thankfully at present we have been reassured its small but Carson on some days cannot walk, he is in pain and his parents feel useless watching their child deteriorate in front of their eyes. Our NHS are outstanding, every single Dr, Nurse, Healthcare assistant, playteam on the wards and radiographers have been amazing, supportive and we only have words of gratitude, but we need to do more, we need answers and treatments which goes beyond what was found on his MRI. We would like the help to fund treatment to give Carson’s life back to him.

Carson has beaten the odds already so many times in his life, he is the most wonderful little boy, and he fights so much daily that we now need to ask for help. No matter the amount, we will fundraise until we cannot do anymore to reach our goal of £10,000 (at this stage) which will pay for the next stage of diagnostics, treatments and any equipment required to give Carson the life he deserves and take the pressure of his family whilst is mother is forced to take time off work to care for his 24/7 needs leaving them without a vital wage. The end goal being that Carson is pain free and alive. Returning to being that once healthy little boy who longs to play rugby again.

Carson’s first appoint is in London on 9th Jan at the Portland children’s hospital. This is a key date to raise the fund for the next step of treatment. All Carson’s treatment will be a mixture of NHS and Private care, to help make the most efficient way forward for Carson’s complex needs.

Carson’s parents are both active in the community and help others in so many ways, by providing xmas dinners to families in need every year, raising funds for various local clubs, organisations & charities. They help peer support for bereaved parents and both coach mini rugby just to name a few. Now is the time we want to help them and give back some of the kindness they show to others. Please help us support them and support their little boy. Every penny makes a huge difference, this fundraiser is created with the permission of Carson’s parents under the control of an appointed Treasurer who will over see all payments to the reasons stated above. Any penny that is no used for the above reason for any reason will be donated to 2wish.