At just a few days old, Tommy Monument underwent life-changing surgery leaving him with a serious brain injury.
But now, the three-year-old from Wroxham is taking on his most mammoth challenge yet with the help of his twin sister, and biggest cheerleader, Eva.
Prematurely born at 32 weeks old, the pair had a challenging start to life, as mum Alex and dad Sam explained.
“When they were born, Tommy was very poorly,” Mrs Monument said.
“It was discovered that he had a diaphragmatic hernia and was given a 50pc chance of surviving.
“He had surgery at three days old and was doing amazingly. Unfortunately, he then suffered a massive infection which left him in a life-threatening condition with a serious brain injury. But once again, this little warrior pulled through.
“Sadly, the infection left irreparable damage to Tommy’s brain called periventricular leukomalacia and, at seven months old, he was diagnosed with cerebral palsy affecting all four of his limbs.”
Tommy is described as a “bright, funny and determined” little boy who loves cars, muddy puddles and making people laugh - especially Eva.
Mrs Monument added: “Tommy and Eva both started nursery together and with the right equipment he is able to do anything. But one thing never leaves his body and that is the spasticity caused by cerebral palsy.
“His brain is constantly sending messages to the muscles in his legs to be tense and this interferes with nearly every activity he does.”
Tommy is unable to sit, stand or walk unaided, and suffers daily discomfort and pain, but the family are now on a mission to help improve his quality of life, to give him the best chance of living independently and also the ability to walk, by having SDR surgery - a life-changing spinal operation.
“SDR surgery is an incredible procedure that would permanently reduce the discomfort Tommy feels and it may even allow him to gain more independence, even walk.
“It would also reduce the need for more invasive surgeries throughout his childhood and daily medication.”
Currently the surgery is not available to Tommy on the NHS and would cost up to £34,000. In addition, an intensive physiotherapy programme is needed before and after the procedure to get the best possible outcome for Tommy, with each private session costing £75.
“As his family we want nothing more than the best quality of life for Tommy and to see him happy, pain-free and living his best life alongside his twin sister Eva. They are a brilliant team and Eva is possibly Tommy’s biggest cheerleader.”
The “amazing team” love going for walks in the woods and exploring together, reciting their favourite book We’re Going on a Bear Hunt - Tommy in his Wizzybug alongside Eva.
Together they have decided that throughout October they will be walking and wizzing their way through a marathon to raise funds for Tommy’s much-needed surgery. The pair will complete the 26.2 miles over 31 days in support of Just4Children, the charity raising funds so Tommy can have his surgery.
Mrs Monument added: “Every day we will be covering just under a mile in some of Tommy and Eva’s favourite spots across Norfolk for Team Tommy’s Marathon Month.
“Tommy will be walking using his walking frame and driving his Wizzybug electric wheelchair.
“We’re going to be joined by some of our lovely friends and family both socially distancing in person and virtually.”
To find out more please visit Facebook or Instagram @TeamTommyforSDR or Just Giving . You can also show your support online by using the hashtag #TeamTommyforSDR.
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