A nine-year-old boy is in agony and often left unable to walk after doctors discovered a growth on his brain. Carson Lee, whose twin Hunter Lee, sadly died when he was just 40 days old, is currently waiting a diagnosis for the growth which has made him devastatingly ill this year.
The rugby-loving school boy from Tylorstown in the Rhondda, who now lives in Burry Port, has battled with health issues for a big part of his life before he started experiencing severe headaches, weight loss and loss of function this summer. When Carson was a few weeks old his lungs collapsed and doctors told parents Martin Lee, 31, and Carly Lee, 32, that it was touch and go.
At the same time, his twin brother Hunter was fighting for his life after being diagnosed with a congenital heart defect, sadly Hunter passed away shortly after. When Carson was 11 months old a spot appeared near to his eye which looked like a spider bite, he was treated but months later it reappeared.
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Mum Carly said over the years it would reappear every few months, and his symptoms accompanying it would get worse; his temperature would spike and cause seizures. In 2019, they were eventually told that it was a virus that lived in a nerve ending in his face and would randomly attack, causing mass swelling making him very poorly.
The usually very active nine-year-old was delivered another blow earlier this summer when he started experiencing crushing headaches. This was quickly followed up by nose bleeds and exhaustion. Carly said: "We took him to A&E because he lost so much blood. The blood that came from the kid, there should not have been anything left."
Carson, who is on the autism spectrum and would usually only sleep a couple of hours a night, started to sleep for 12 hours at a time. He also started to lose a lot of weight. Carson, who is brother to Madi, 13, Arya, 6, Thea, 5, and Daisy, 2, stopped being able to compete in rugby and athletics at this time.
He was treated at his local ear, nose and throat department for the nose bleeds with cauterisation and opticians said his eye sight appeared fine. It was in October when he was taken to hospital for suspected appendicitis when the family started to get close to a diagnosis for their little boy.
Blood tests showed it wasn't appendicitis, but an issue with his pancreas. They were asked to return five weeks later for comparison tests. However, during this time, Carson started to lose his cognitive abilities. The left side of his body would give way and he would have no power to move. Walking would leave his legs in severe pain and he started to fall over through no cause of his own.
When the family returned to Glangwilli hospital for the follow up tests, the doctor told them Carson would not be going home as he was so unwell. She said: "The doctor took one look at him and was like you are not going home. He could see he was not a healthy child by any means, he was curled up in a ball in agony."
He spent nine days in hospital having tests and scans, and an MRI discovered an abnormal growth on the right frontal lobe of Carson's brain. Carly continued: "The day that they told me, they took me off the ward and put me in a private room, and I knew it was something serious. I was quite hysterical, I left the ward because I was crying and then I went back in and wanted to pretend everything is ok to Carson, and then he went and told his older sister 'They took Mammy out, she was crying', and I'm like no you're okay, you're okay.
"He reads between the lines a lot, he doesn't know the extent of it, we have told him he has got a little nugget in his head. We don't want to worry him. When he starts to lose power and feeling he starts to have panic attacks, he is like 'I can't move my arm what's going on'', and he gets really upset."
Having previously had a scan in 2019, doctors were able to confirm that this was new and not something he was born with. Due to its position, they are unable to go in and operate to see what is going on, so he requires further investigation before a firm diagnosis and treatment plan is given.
However, Carson is expected to be waiting a few months to be seen by the NHS as his condition is not critcal, which the family understand, but they can't bear to wait months before they know what is going on. In mam Carly's words: "He has deteriorated so much over the last few months, to us, we think he can't wait, if he continues like this we are worried he will be dead. They have told us the next few months are going to be very difficult for us with stops and starts because they don't know what is causing it.
"Hunter died because of medical negligence, and the doctors with Carson have been outstanding, but because of that, we don't want to take any chances. Glangwili Hospital and Cardiff's Noah's Ark Hospital have been absolutely amazing. They have been brilliant with him, but we just need to get the answers as soon as possible."
Hunter was born at the Royal Glamorgan Hospital in 2013. The hospital was put into special measures due to the care that women received while giving birth there. You can read about Hunter's story here.
They have been reassured that the growth is small, but it is still leaving Carson in severe pain. He is mostly off school, but has returned to Pembrey Primary School on a part time basis because he desperately misses his friends. He can no longer play rugby or participate in athletics. There are days where he is unable to walk and he is currently spending most of his time in a wheelchair to avoid injury from any unexpected falls.
"Yesterday was a good day, he restarted school last month on a part time basis. His school have been outstanding, they have a dedicated teaching assistant in his class just for him, they have altered activities because he is in a wheelchair now. I cannot praise them enough, they are really going above and beyond.
"We took him to his rugby Christmas celebration (Bury Port RFC) the other day and he was just so sad he couldn't participate. He just wants to get back to playing with his friends again.
"Last night, he woke up quite a lot as he was in quite a bit of pain. We dropped him off this morning but are expecting a phone call shortly because it is not a 100% day today."
Family friends have set up a fundraising page in order to pay for Carson to attend a private hospital for a diagnosis and treatment. Carson is Carly and Martin's only son and the only connection they feel they have left to his twin brother Hunter. The funds will also help support the family as Carly has had to stop work to care for Carson at this time.
They have an appointment booked for January 9 at a hospital in London where all the reports, tests and MRI's will be compiled together. He will have another MRI scan to see if the growth has grown which will help determine how aggressive it is. To make a donation click here.
They have received huge support from the rugby community in both their hometown Tylorstown and their new home Burry Port as well as the pageant community and Dreams UK. In the meantime the family of seven are planning on making this Christmas extra special and are hoping Carson's pain eases so he can enjoy the big day.
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