THE desperate family of a disabled Galashiels girl have asked for leftovers from the Borders Railway to help build a ramp to their home.

Brian and Shona Johnstone have been fighting with the authorities for almost three years to have easier access built at their Melrose Road home.

After regular rejection letters and the loss of an appeal they have resorted to asking private companies for help - including railway contractors BAM Nuttall.

Rihanna Johnstone was born 15 weeks premature at Borders General Hospital in August, 2011.

She weighed just 866 grammes and was found to have life-threatening conditions and disabilities.

Rihanna is reliant on an adapted buggy for mobility and requires a constant oxygen supply.

While some help has been at hand from the health and social work authorities, finding support to create a disabled access has left the Johnstones banging their heads against a wall.

Shona told us: “The one thing we want is a ramp so that we can take Rihanna out and in the house. She loves going for walks but it is such an operation to get up and down the stairs.

“All we have heard for the past couple of years is 'No’ from the authorities - they always find a reason not to help.

“These people should spend a day in our shoes.

“We don’t know how long we will have Rihanna with us and we want to give her the best life we can - I don’t care what the authorities say.

“I have asked BAM if they can give us materials left over from the railway so that we can look at building a ramp ourselves.” During her emergency birth, Rihanna suffered a brain haemorrhage and irreversible eye damage which has left her almost completely blind.

She was diagnosed with a chronic lung condition as well as renal vein thrombosis.

Further health complications and issues were later discovered.

And since returning home to Galashiels in December, 2011, she has been readmitted to hospital for surgery and treatments 54 times.

Yet Rihanna smiles and laughs her way through each painful day in the arms of either her mum or dad.

Brian, who had to give up his job earlier this year to help Shona with their daughter’s care, said: “She’s the most adorable little girl you could find - despite everything, she has a smile on her face and she’s always giggling and laughing.

“We have had to fight for every bit of help we’ve received so far. We’d do everything ourselves but you can add a couple of zeros onto the price tag of anything for a child that has a disability.

“We get help but we could do with a lot more.

“When do you stop fighting for your daughter? All we are trying to do is get the best we can for Rihanna. We want to be able to take her out for walks but it is so difficult getting everything up and down the stairs - when we go out we need the same amount of stuff that a family would need for a holiday.” The Johnstones bought the Melrose Road property with a view to turning it into their dream family home.

They had completed several internal projects but the renovation work stopped with Rihanna’s sudden arrival.

To compound their problems mum Shona has also now been diagnosed with diabetes and osteoporosis, and has her own mobility problems.

Local charity Cash for Kids has been supporting Rihanna and her family over the past year with a new washer-drier, after the family washing machine packed in, as well as a few specialist toys.

And during their recent Superhero Day they raised enough money to purchase a specially adapted swing for the garden.

Candy Rafferty, from Cash for Kids, said: “Shona was going through Rihanna’s entire set of clothes in one day, struggling to get them clean and dry. Cash for Kids was able to react immediately and had new machines installed within a few days.

“On Superhero Day we raised enough to buy Rihanna a specialised swing so she can enjoy the outdoors. “I have just ordered it up, but we are now needing decking to put it on, which will be around £3000.

“We’ve been helping out with various pieces of equipment over the past year. “I was horrified by the fact that if you have a disabled child you can just start adding on hundreds of pounds to the cost of a buggy or toys or feeding equipment - anything that a child needs. “It’s totally the wrong way round, especially in their situation, where Brian and Shona have both had to give up work to devote their entire lives, with no respite, to Rihanna. She needs round the clock care.” Cash for Kids did investigate creating an access ramp to the front of the Johnstone’s property but it was going to prove difficult to fund due to the complexities of the gradients.

But Ms Rafferty hopes that something can still be done.

She added: “Shona herself has osteoporosis of the spine, so is in dreadful pain. “Rihanna’s buggy is so heavy, I can barely lift it off the floor – designed so it can never tip up when she is in it. I can’t imagine how Shona manages to get it up the steps every day.” Scottish Borders Council’s Children Affected by Disability (CHAD) team carried out the initial investigation three years ago into creating a disabled access to the property.

And they have stuck by their initial assessment, that it would be too difficult.

This week a spokesperson for the local authority said: “The council and colleagues from NHS Borders have worked with this family over a significant period of time to assess the suitability of their property and explore all possible options for adapting it to meet the child’s developing needs.

“Unfortunately the outcome of our investigations has been that it is not possible to adapt it in an appropriate manner.

“An independent accessibility officer commissioned to review the work undertaken reached the same conclusion.

“We continue to try to engage with the family to resolve their housing issues and have offered them a range of solutions.

“We also provide additional ongoing support in other areas to help meet the needs of this child and her family.”