Brave Crawley toddler’s leg is saved thanks to charity hospital

jpco 30-4-14 Fundraising for GOSH (Pic by Jon Rigby) SUS-140428-125147001
jpco 30-4-14 Fundraising for GOSH (Pic by Jon Rigby) SUS-140428-125147001

A mother described the ordeal her family went through to save her son’s leg from being amputated.

Claire Maguire, 32, and her partner Ben Brown, of Lime Close, Langley Green, saw their three-year-old son, Jacob, undergo “horrific” treatment which saved his leg by removing an affected bone and having it re-grown.

Jacob was born with a hereditary genetic condition, neurofibromatosis, which caused tumours to grow along his nerves.

Claire said his left leg’s tibia and fibula were so fragile they could snap and he had to undergo treatment at Great Ormond Street Hospital in London or have his whole leg amputated in 2012.

Claire said: “It was very hard.

“It was either an amputation or give the operation a go.

“My mum came in and we had a cry.”

Claire said a “very long and painful” four months followed the decision.

A heavy 26-pin metal cage was screwed on to Jacob’s leg.

Claire tightened the bolts as the bone was re-grown centimetres at a time.

She said: “He was in pain, it was horrific doing it.

“We were constantly arguing because it was upsetting Jacob, me and my partner nearly split up.”

Claire said the Lizarov cage’s pin-sites became infected and caused him more pain.

She said: “We almost lost Jacob, he never smiled when he had it on, he just sat there, he became withdrawn.”

Claire said she will never forget the day Jacob’s leg was successfully operated on a day before his fourth birthday at the children’s hospital on Aug 22 2012.

She said: “I can never forget it.

“I just cannot believe the amazing work they do.”

Jacob turned into a “different person” the day the cage came off.

His leg was put in a plaster cast for six weeks and the four months was hailed a success at the children’s hospital.

Claire said: “It felt like a whole big weight lifted of our shoulders.

“Jacob smiles through the whole thing now, he’s the most lovely little boy you can ask for.”

Jacob, who attends Manor Green Primary School, will wear supports on the front and back of his shin until he is an adult.

Claire said: “It’s never going to be 100 per cent but he’s walking on it and he’s got his two legs.”

The family put together a book charting Jacob’s ordeal to show him how brave he was.

Claire will give a speech and helped organise a quiz night and raffle in aid of Great Ormond Street Hospital.

It will take place at Three Bridges Football Club, Jubilee Walk, at 8pm on May 22.