A devoted dad whose baby son died soon after his first birthday is pushing himself to the limit in memory of the "wonderful wee boy".

 

Little Tom Rankine was 14 months old when he passed away peacefully in his sleep suffering from rare genetic disease Spinal Muscular Atrophy (SMA).

His twin brother Alex is unaffected by the condition which causes muscle weakness and loss of movement.

When doctors gave dad Sean and his wife the devastating news that Tom's precious life would be short they turned their pain into determination to make him as happy as possible.

With help from the Children's Hospice Association Scotland (CHAS) the Rankine family, who live in Bishopbriggs, were able to spend quality time together in the Robin House hospice in Balloch.

Tom enjoyed using the specialist facilities, including heated pool and sensory room, and the family made memories to cherish.

Now Sean, 43, a teacher at Hillhead Primary School, has set himself the challenge of raising £10,000 for CHAS to say thank you and to help ensure other families continue to receive their help.

In six weeks he will embark on a gruelling 150-mile run across the Sahara dessert as part of the Marathon Des Sables, known as "the toughest footrace on earth".

And on Friday 700 pupils and staff from Hillhead Primary School will take part in a 'Jammie Jog' in their pyjamas around Kelvingrove Park to boost the fundraising total and show support for their teacher and colleague.

Sean said: "The work that CHAS do is absolutely vital and we just can't thank them enough for everything they did for Tom - right up to the end of this life.

"When he passed away at home he stayed with us for a while.

"Then his CHAS care worker came to collect him and carried him on her knee to Robin House. He was taken to a room with his pictures and toys.

"He wasn't just taken away in an ambulance - that was a big thing for us."

Sean added that support from the charity helped them cope but they still think about Tom every day

He said: "Tom was very bright and inquisitive. He was very cheeky and was always laughing.

"Tom was brave, happy and positive.

"He got a great deal of joy from others and he loved to watch people.

"Alex is four now and he often talks about Tom and says he misses him. His pictures are all over the house."

When the twins were born at the Southern General Maternity hospital on April 16, 2010, Sean and his wife had no idea of the journey that lay ahead of them.

But they soon realised a difference in the way the boys were developing.

Sean said: "Tom wasn't moving in the same way as his brother was - this is because in babies with SMA the muscles don't receive the proper signals from the brain.

"Tom also had really bad reflux and this is also a symptom of the condition."

Tom's parents took him to a local GP and who referred him to specialists at Yorkhill and when he was six months old he was diagnosed with SMA.

Sean said: "My wife and I were told that SMA is very rare because both parents have to carry the gene for the child to have the chance of being affected.

"Children with Tom's condition rarely make it past their first birthday.

"SMA is on a scale and we initially thought that he had a lesser form. However, months later we learned his condition was worse than previously thought.

"We were absolutely devastated but we just had to focus on trying to make Tom as happy as possible."

The family contacted CHAS and they offered them the use of their Robin House hospice.

They visited around five times, including overnight stays, enabling them to spend quality time together as a family.

CHAS provides the only hospice services in Scotland for children and young people who have incurable life-shortening conditions.

The charity runs two children's hospices, Robin House in Balloch as well as Rachel House in Kinross, and a home care service called CHAS at Home.

At the hospices specially trained staff share the care of children and babies with families so that they can relax and enjoy time together as a family.

It costs £25,000-a-day and £9 million a year to run the hospices and services and support over 350 families.

A spokeswoman for the charity said: "We're mostly reliant on donations to provide the vital support that CHAS offers, that's why we're so grateful for the generosity of our supporters.

"We want to help families make every moment count and create lasting memories with their children in a loving, caring environment."

Sean has so far raised more than £3,500 towards an ambitious target fundraising target of £10,000.

He said: "I planned to take part in the Marathon de Sables a few years ago and I can quite believe I only have six weeks of training left.

"I am excited and nervous but Tom is my inspiration for this and I know he will spur me on."

To donate to CHAS and support him in his challenge in memory baby Tom visit www.justgiving.com/Sean-Rankine1/

linzi.watson@eveningtimes.co.uk