A mum who nearly lost her baby to a rare condition is getting ready to take on a skydive to raise money for The Sick Children’s Trust that supported her family through the nightmare.

Ely Standard: Drew Smart was diagnosed with a rare condition from birth. His family were supported by the Sick Children's Trust PHOTO: The Smart familyDrew Smart was diagnosed with a rare condition from birth. His family were supported by the Sick Children's Trust PHOTO: The Smart family (Image: Archant)

Gemma Smart, 31 from Littleport, is preparing take on the challenge this weekend to say thank you to the charity which helped as their son fought for his life in hospital.

Gemma, who has already passed her fund raising target by raising £2,628, said: “This amazing charity gave us a place to stay when we were desperate. out of our minds with fear and worry when we thought we were going to lose our beautiful son.

“I felt hopeless back then watching my baby who was so tiny and helpless with doctors rushing around trying to save his life.

“It still hurts to think about it now.

Ely Standard: Drew Smart was diagnosed with a rare condition from birth. His family were supported by the Sick Children's Trust PHOTO: The Smart familyDrew Smart was diagnosed with a rare condition from birth. His family were supported by the Sick Children's Trust PHOTO: The Smart family (Image: Archant)

“The Sick Children’s Trust really helped Rob and me. I don’t know how we would’ve coped - I was honestly on the verge of a break down.

“In what was the hardest time of our lives, being able to stay at Acorn House was an incredible help, and a huge comfort when there was so little comfort to be had.

“I think we would’ve become very sick ourselves without the help of Acorn House Manager Abi and her team.

“We were with Drew from 7am until 10pm each day. When he was really ill and I was terrified for him, I was able to walk back across the road from Acorn House and sit with him all night.”

Ely Standard: Drew Smart was diagnosed with a rare condition from birth. His family were supported by the Sick Children's Trust PHOTO: The Smart familyDrew Smart was diagnosed with a rare condition from birth. His family were supported by the Sick Children's Trust PHOTO: The Smart family (Image: Archant)

At just a few days old, Drew underwent emergency surgery to fit a stoma and colostomy bag after being diagnosed with colonic atresia, where the colon hasn’t formed correctly and results in a very rare type of obstruction in the intestines.

Six months later, Drew was readmitted to Addenbrooke’s Hospital for his stoma to be reversed.

The operation seemed a success, but Drew soon took a turn for the worse becoming increasingly unwell as scar tissue had caused his bowel to become perforated.

Over the next three weeks, Drew endured three emergency operations to save his life.

Mum Gemma and her husband Rob watched on helplessly as their only child endured operation after operation, still only a few months old.

Throughout this time they were just minutes from their baby’s hospital bedside at Acorn House, free home from home accommodation run by The Sick Children’s Trust.

Drew spent nine weeks in hospital before his parents were finally able to take him home.

He is now nine months old and doing well.

Gemma said: “Drew has been through so much at such a young age. He continues to make huge steps towards recovery, although it will be at least six months before doctors can once again try to reverse his stoma operation.

“For now, we’re just so pleased to have him at home with us.”

• The Sick Children’s Trust runs ten homes from home across the country, giving families with seriously ill children free accommodation just minutes from their child’s hospital bedside. The charity relies entirely on voluntary donations. It costs the charity £30 to support a family for one night.

• Acorn House Manager, Abi Abdel-aal, said: “We’re thrilled to hear that Drew is doing well back home with Gemma and Rob. It has been a real rollercoaster for them, but it’s wonderful to hear he is on the road to recovery.

“Gemma’s friends and family have been so generous with their donations and thanks to all this money raised, The Sick Children’s Trust will be able to make a huge difference in supporting families with seriously ill children in hospital with free ‘Home from Home’ accommodation.”

• To donate visit Just Giving.