SOFIA Lund was born with a condition which affects just one in four million and needs at least four open heart operations.

The baby girl from Acomb, who has the very rare TAR (thrombocytopenia with absent radius) Syndrome, was born with no bones in her forearms, and also has a heart defect, Absent Pulmonary Valve Syndrome.

Eight-month-old Sofia requires a minimum of four open heart operations before she can move on with her life, but doctors are unable to set a date for surgery because she is currently too weak.

Mum Vikki, 34, also has no idea if her daughter will ever be able to use her arms.

A kind-hearted businessman has taken it upon himself to raise thousands of pounds to help the family.

When Paul Miller heard his friend's daughter was born with TAR he decided to do all he can for Sofia and her mum to help them buy a £2,000 wheelchair and extend their home, in The Knoll, Acomb, by raffling donations at his Ocean Coral and Reptiles shop in Clifton Moor.

His efforts have overwhelmed Miss Lund, who says his support has eased the pressure of coping with Sofia's conditions and raising three other children, Owen, 16, Karla, seven, and Tyson, four.

She has now nominated him for Community Pride's Person of the Year award.

Miss Lund said: "He is an amazing person but when you tell him how good he is he's very laid back about it.

"He's got his own family and runs his own business but has managed to raise money for Sofia.

"Paul has done something really good and there's not that many people out there that would do something like this.

"This is my way of saying thank you and I wanted to show everyone how brilliant he is.

"He doesn't want to stop yet either, he wants to keep going and do more. He has two boys but is still marching on for Sofia's wheelchair."

Dad-of-two Mr Miller has also orchestrated the help of builders to start constructing the new room for Sofia, which will ultimately store all the equipment she needs and give her a place to relax.

He said: "I was dyslexic growing up and know what it's like to struggle in certain aspects of life.

"My son is autistic and struggles, and Sofia's brother has Attention Deficit Hyperactivity Disorder (ADHD), but Vikki never moans.

"I'm in a position where I know people in the right places and I'm in a position to help.

"She got to the point where she needed to advertise what was happening with Sofia, so I said I would help by putting it on our Facebook page which has 2,000 likes.

"We are closing in on £3,000 but we need to do more because the cost of helping her will be never-ending."

Mr Miller began raising donations by contacting his suppliers and raffling marine and reptile products at his Stirling Road shop.

He was also able to acquire rare £1,500 reticulated pythons from a friend in Blackpool. They will be sold in the shop with the proceeds donated to Sofia's cause.

He hopes his will help give Sofia the best start in life after already making several trips to and from hospital.

Miss Lund said: "When I was pregnant doctors told me she only had a 21 per cent chance of not having a heart defect or breathing difficulties.

"It was awful not knowing what was going to happen when she was born.

"But Sofia is so feisty and keeps all the doctors on their toes.

"When the doctors say 'she won't be able to do that' she must hear them because a few days later she will be doing it."

Community Pride is run by The Press and City of York Council, and the principal sponsor is Benenden.

All nominees must live in, or contribute to life in, the City of York Council area. Around three finalists from each category will be invited to the awards ceremony at York Racecourse in October, when the winners will be revealed.

You can make a nomination online at yorkpress.co.uk/communitypride/. Entries must be submitted by Friday, July 17.
 

What is TAR Syndrome

Babies born with the rare genetic disorder TAR Syndrome do not have a radius bone in their forearm.

They also have a shortage of blood cells involved in clotting which appears during infancy and becomes less severe over time as the platelet level balances out.

Those suffering from the condition can potentially endure episodes of severe bleeding in the brain and other organs during their first year.

But children who survive this period and do not have damaging haemorrhages in the brain usually have a normal life expectancy and develop normally.
 

What is Absent Pulmonary Valve Syndrome

Absent Pulmonary Valve Syndrome is a congenital heart defect where parts of the organ do not function properly, resulting in severe pulmonary incompetence.

The condition can cause breathing difficulties as arteries often become enlarged, compressing and narrowing air passages in the lungs.