Telford family needs £20,000 for son, 8, to undergo procedure for painful cerebral palsy

Eddie Ironmonger was born eight weeks early and spent the first three weeks of his life in the neonatal intensive care unit (NICU).

While in the NICU, Eddie was ventilated due to his underdeveloped lungs and required a blood transfusion as he was suffering from sepsis.

Due to this, he was left with brain damage which caused cerebral palsy.

Eddie's parents, Emma and Mark Ironmonger, have now set out to raise £20,000 to pay for Eddie to undergo Selective Dorsal Rhizotomy (SDR) which reduces spasticity in the lower limbs.

Emma and Mark, who live with Eddie in Hadley, Telford, said they just want to ease Eddie's pain – which often wakes the eight-year-old up in the night – and allow him to move easier.

Mark explained: "We had heard about the procedure many years ago but it wasn't something we considered at the time because Eddie was very young. But then obviously, as he's gotten bigger and older, we started to reconsider.

"It's just getting hard to lift him and he's unable to bend with us so he's in a lot of pain. A few years ago we finally managed to get a consultation with a doctor from Alder Hey Hospital Liverpool who came to Telford to meet us and Eddie.

"He agreed Eddie was a worthy candidate for the procedure. Then of course Covid hit so everything was delayed. After that we didn't hear anything until last year.

"We had another consultation and the doctor was really great and referred us again. That was in August last year. But last week we had a physical assessment, and they again agreed Eddie is a good candidate. Due to his weight and height, he is at the maximum so this is the best time to help him."

The Gross Motor Function Classification System (GMFCS) is used to assess a child with cerebral palsy's level of motor function. For this procedure, levels 2-3 are funded by the NHS but level 4 is not – that is Eddie's level.

Eddie has spastic diplegia, which affects the muscle control and coordination in his legs and arms, making them stiff and contracted, which has left him unable to walk and can be painful. As he grows, the muscles will get tighter, making exercise even more painful for him.

The family have recently had backing from the Tree of Hope charity who have set up a Just Giving page for them which they will help us raise money for.

Emma said: "The charity helps a lot of families to raise money for SDR. A lot of businesses don't donate money to individual fundraisers, only through registered charities, so this could really help us.

"We are his carers as well so it's getting harder to care for him because of how stiff he is. We often have to manipulate his limbs and we know that sometimes that causes him pain.

"We have had a couple of other treatments before where they treated the nerves, and we did notice a difference but it was very temporary. This is the only permanent way of reducing the spasticity in his legs."

The couple said Eddie is a very sociable and happy boy, and wants to be able to play with his friends on their level.

"The pain is mainly in his legs, it wakes him up at night and prevents him from doing some activities he loves," Mark said.

"We bought him an adapted bike which he loves but struggles to use from the pain. He also likes to go horse riding, part of his physiotherapy, but will struggle with that too. The stiffness in his body makes everything uncomfortable.

"It's hard to be picking him up as he's getting heavier. For his sake as well, we notice that as he is getting older, he is noticing the pain more – it's just all about making him more comfortable."

The pair said they hoped the SDR procedure would "help expand Eddie's world".

The fundraiser has so far raised more than £2,000. To donate, visit www.justgiving.com/fundraising/fundraising-for-eddies-sdr.