Rugby grandparents urge support to help beloved granddaughter live a longer life - The Rugby Observer

Rugby grandparents urge support to help beloved granddaughter live a longer life

Rugby Editorial 25th May, 2016 Updated: 27th Oct, 2016   0

A COUPLE from Rugby are campaigning to make a drug which treats a rare spinal condition available to help their one-year-old granddaughter live a longer life.

Jean and Graham Russell from Bilton have been fighting to make the drug Nusinersen, currently being trialed in the US, available for treatments in the UK to help their beloved granddaughter, Helena.

Helena was born a year ago and at only six months old was diagnosed with a rare condition called Spinal Muscular Atrophy. Her parents William and Charlotte Russell, who recently moved out of Rugby, started to notice she wasn’t moving like a normal baby girl and she often had difficulty sitting up and putting pressure on her feet.

One-year-old Helena was diagnosed with Spinal Muscular Atrophy when she was only six months old. (s)

When they rushed her to hospital, the couple were given the heartbreaking news of Helena’s condition.




When doctors told them most children with the condition rarely survive beyond two years, they realised they could only watch their daughter continue to decline – and one day they would have to say goodbye to their baby girl.

Writing on their ‘helpforhelena’ website, her parents said: “The impact of this news was initially like grieving. All I could think about was the thought of my baby girl dying and I mourned the loss of all the hopes and dreams I had once had for her.


“I remember breaking down in tears upon hearing that it was every parent’s worst nightmare.

“I think in time you come to make new dreams and come to the realisation that you’ve got to make the most of the time you have, however long that might be.”

Not giving up without a fight, Helena’s parents and grandparents have decided to give the best life they can to Helena – and set up a petition and informational website calling on others to help them fight to get the vital medication available to children in the UK.

The petition currently has more than 7,200 signatures, but will need to reach 10,000 before the government can officially respond.

The family are also fundraising as much as they can as Helena will require expensive equipment not funded by the NHS to improve her quality of life. So far there has been a black tie dinner, sponsored walks and a weight loss challenge – and the family will be throwing their own fundraiser at Dunchurch village hall in October.

For more information visit www.helpforhelena.co.uk or search helpforhelena on Twitter and Facebook. Visit https://petition.parliament.uk/petitions/121253 to sign the petition.

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