By Cronan Scanlon
A LETTERKENNY man is literally in a race against time to raise enough money to fund life-changing therapy to help his ten-year-old daughter walk unaided for the first time.
Stevie Harper completed the Donegal Marathon last Sunday and will run the Dublin Marathon in October.
The ‘Run for Grace’ is just one of a number of events organised to help raise the thousands of euro needed to provide crucial therapy and equipment for his courageous daughter, Grace. If she can avail of these within the next two years, she may be able to walk unassisted.
When she was almost a year old, she suffered two convulsions brought on by viral meningitis. As a result, Grace lost all of her physical abilities, including crawling and speech.
Speaking to the Donegal News, Stevie said that, initially, they had feared Grace would not pull through.
“Everything was fine when she was born,” he explained.
“However, around her first birthday, she got meningitis. She lost her speech and ability to move and we did not know if she would pull through. Six months later and the picture still looked bleak.”
Since then, however, Grace’s journey and that of her family, has been incredible. With the help of regular and intense speech therapy and physiotherapy, she slowly re-learned how to speak and has regained her upper body strength.
In September 2012, Grace began to walk short distances with the support of a ‘K Walker.’ She can now swim, cycle her tricycle and ride a horse independently. However, she still has to rely on her wheelchair to get around.
She also has difficulty bearing weight and her parents have identified a number of additional therapies they feel might enable Grace to become stronger and walk greater distances.
However, these therapies will costthousands of euro, at least, and must be carried out within the next two years if she is to walk independently again.
Dad Stevie is a native of Woodland, Letterkenny, now living in Dublin. A psychologist at Mountjoy Prison, he is married to independent radio producer, Susan Dennehy from Cork. They have three children, Sean (14), Martha (13) and Grace.
However, Susan has had to give up her job in order to care full-time for Grace and the family recently had to purchase, and specially adapt, a new home fit for Grace.
As a result, this has placed a huge financial burden on the family.
“We bought a house on the Navan Road and had it specially adapted for her and pumped all of our own money into that,” Stevie said.
“There is a small window of opportunity between now and up until she reaches 12 years of age and we want to maximise her recovery and cannot do that without the help of family and friends.”
The independent Grace Harper Trust has recently been established, the directors of which are Emmett Murray from Letterkenny as well as Susan’s friend, Trish Flynn.
The trust aims to ensure that Grace is assisted with everyday living and that she is provided with the best possible care.
In the coming year the trust plans to fund Grace’s rehabilitation in a number of ways.
Sue and Stevie plan to take Grace to the Brainwave Clinic in the UK for a private assessment and therapy programme. They also intend to hire a private physiotherapist to work with Grace in her own home once a week and to avail of the Alter G anti-gravity Treadmill at the Medfit Clinic in Dublin.
“This will all cost a lot of money,” he adds, “so we set up a trust and all the money raised will go directly towards Grace’s care.”
Grace has been diagnosed with a condition called ‘marked paraplegia’, however, Stevie says there is “no medical reason” why she cannot walk.
“Gravity is working against her as she is getting bigger and taller, so, it is getting harder for her to get on to her feet,” he explains.
“Her neural pathways will close off when she reaches around 12 years of age. So, whatever improvements she makes, will have to be made before she reaches twelve. There is no medical reason whey she cannot walk – it’s just that she has never walked before and has never gone through the development milestones that other children have.
“The more she gets on her feet, the better chance she will have of preventing secondary problems, such as circulation and issues with her hips.”
Stevie said Grace’s condition is “a mystery” to the expert staff at the Central Remedial Clinic and the Temple Street Children’s Hospital.
“Hopefully, she can improve with the help of the additional treatment. We are going to do everything possible for Grace, so at least we can say ‘we tried’.
“It’s not that we don’t accept Grace as she is, we absolutely do. As her parents, we have a duty to give her every chance to fulfil her potential. We have done as much as we can so far, with the help of the CRC, but now is the time to try additional therapies before the window for early intervention closes, and we cannot do this without the support of friends and family.”
If you are in a position to help, you can make a donation via www.graceharpertrust.com
See Friday’s print edition of the Donegal News for full report.