THERE HAS BEEN a lot of talk about Katie Lonergan this past week, the three-year-old girl from Co Kilkenny, who has cerebral palsy spastic quadriplegia but is determined to walk.
Katie is a surviving twin, born 15 weeks early. She fought to survive, spending 19 weeks in the Neonatal Intensive Care Unit in Waterford Regional Hospital, during that time she underwent heart surgery in Crumlin and had numerous blood transfusions. This battle left Katie with lasting effects and she was diagnosed as profoundly deaf and with cerebral palsy spastic quadriplegia.
Even after being told that Katie would never walk, her parents Aisling and John never gave up hope.
They heard about Selective Dorsal Rhizotomy, a surgery that eases muscle spasticity and improves mobility for children with spastic cerebral palsy. However, the treatment is not available in Ireland, but is offered in Bristol, UK and Missouri, USA.
Although the HSE has started offering SDR treatment in Bristol through the ‘Treatment Abroad Scheme’, the Lonergans were told that Katie would not qualify as she was too badly affected.
“I would love if the HSE could eventually provide for this because there are so many Irish children who are looking for SDR,” Aisling told TheJournal.ie. “Even raising awareness through Katie is all worthwhile.”
Aisling said they decided against Bristol because the process “takes too long” and although it will be more expensive, they chose America for treatment.
“We felt, and we still feel, our best option is to go to America with Katie,” Aisling said. “We gathered all of the relevant information needed for America and within two weeks we had a reply. It’s the sooner the better we get treatment for Katie because her hips are developing abnormally.”
Aisling explained the surgery works in every case but the degree it works best depends on how much work and physio is put in after.
Katie was three in September and Jamie, her 18-month-old younger brother, is already getting up and running by her, which Aisling explains ”is hard for us to see”.
The family hope to travel to America in April and will find out a definite date next month. So far they have raised €13,000 of the €60,000 needed to fund the trip and treatment, but Aisling believes that any chance Katie has to walk is priceless.
To give her independence and a better quality of life is priceless. It will open so many doors for her.
We live in a small rural community and they have promised us they will leave no stone unturned to make sure we have the money to go to America when we need to go.
“People are rallying around to offer their help and support,” said Aisling. “It is so inspiring to see the generosity of people.”
For more details and to donate visit Katie’s Wish to Walk.
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