Finley Ramson’s condition is so rare it does not have a name. His parents, Rhys and Brett, were told last year by doctors that his body’s immune system fights fat like it is a virus.

The four-year-old has never eaten solid food and has been tube-fed a medicated formula for the past three years, while fatty acids are fed directly into his heart.

Mum Rhys says: “His body rejects food because his immune system attacks itself, fighting the food as it thinks it is a virus.

“He has had nine operations and undergoes fortnightly bloods to ensure the medication he is on is not affecting his organs. He really just wants to be like other kids.

He never complains though, even though he has been through a lot.”

Finley also has Ehlers Danlos Syndrome, which affects his joints and causes a lot of pain.

However, the happy little boy does not let his conditions get him down.

At Christmas, when Rhys asked him what he wanted from Santa he said “a helicopter ride with Spiderman”.

Rhys, 28, from Battlesbridge, contacted the charity Wipe Away Those Tears and recently they made Finley’s dream come true.

Rhys says: “When I asked Finley what he wanted for Christmas, he replied ‘a helicopter so Spiderman can come and fly with me’. This, along with a Ninja Turtle toy, was all he wanted.

“It was so exciting to get the text message to say the helicopter ride was happening.

We left a note for Finley, so he knew something was happening.”

The family left Stapleford Airfield, in Epping, and flew over London with Spiderman in tow.

“Finley turned to me and said ‘this is the best day ever!’ It was so nice for him to be a normal little boy for a day,” says Rhys.

“He had been in hospital the day before, because his picc line, a catheter which goes to his heart, was infected. Having a lovely treat the next day was just what he needed.

“He was thrilled to spend the day with Spiderman and we flew over London and saw the VE Day procession. It was amazing.”

It has been an uphill struggle for Rhys and the family to get answers about Finley’s condition.

She says: “Great Ormond Street and Broomfield Hospital have been incredible, but so little is known about his condition it has been a struggle to get answers.

“I breastfed him for seven weeks after he was born and he was very poorly. My daughter, Georgina, who is seven, is allergic to dairy, eggs and soya, and we thought it was similar to that, but it is a lot more severe.

“When he is poorly, he has to go to the toilet 20 times a day and has blood and mucus in his stools. Last year, he was in hospital for eight weeks and was fed directly into his heart the whole time and they pinpointed that fat was the problem.”

Finley’s condition is currently being researched to find out more about it.

Rhys says: “It is not something they have seen before and there is not even a name for it. They are currently conducting research with Oxford University to find out more. It is a relief that we might be on the right track to getting answers.”

As a family, they have raised over £11,500 for Great Ormond Street Hospital’s Gastro Unit.

She says: “We will never be able to repay the doctors and nurses for all they have done for us. They have been amazing.”

Visit Finley’s Facebook page at Finley’s Fundraising Warriors and wipeaway thosetears.org for details.

ABOUT THE CHARITY

his helicopter ride with Spidey helicopter ride over London with Spiderman JASON O’Shea, from Brentwood, founded the charity Wipe Away Those Tears in 2006.

It aims to grant a wish and bring a sparkle into the lives of terminally or seriously ill children all over Essex.

Every penny that is raised goes towards helping brighten up the lives of children.

Visit wipeawaythosetears.org for details.