Tilara Costa Holmes is a six-year-old in search of a ‘miracle’. But to give her a shot at the miraculous, considerable funds must be raised.
Diagnosed at 12 months with spastic diplegia cerebral palsy, Tilara is confined to a wheelchair. She has ongoing, chronic pain and regular spasms, and her movement is severely restricted. Tilara cannot take part in many of the daily activities of living, such as walking and sitting.
In spite of the challenges, her mother says she remains an upbeat, happy little girl, and she attends mainstream school, in St John the Baptist’s, Midleton, Co Cork.
Determined to improve her prospects, her family and friends have embarked on an ambitious campaign to raise the €140,000 needed to pay for what could be life-changing surgery in the US.
Tilara has been accepted as a patient of Dr TS Park, a paediatric neurosurgeon, who specialises in treating children with cerebral palsy.
“Someone else in our town had the procedure done in the USA by Dr Park, and it was successful. But for each child, there is a different outcome. Our hope is that Tilara will be pain-free and that it will improve her mobility,” says Natasha, Tilara’s mum.
Tilara herself is hoping for a ‘miracle’ — that the surgery will allow her to walk. “Any parent’s dream is that their child could leave her wheelchair behind,” Natasha says, but any improvement would be welcome.
“We are realistic about the attainable goals, which will be set for Tilara and her future. We have thought, long and hard, about SDR and realise that this is the only option for Tilara to live a pain-free life,” Natasha says.
SDR is the only surgical procedure that can provide permanent reduction of spasticity in CP. It involves cutting some of the nerve fibres that cause spasticity and it requires an intensive aftercare programme.
And while doctors in Leeds, in the UK, conduct similar surgery, Natasha says they are relatively new to it.
“In America, they’ve been doing it for 30 years; in Leeds, about five years,” she says.
The family, including Tilara’s siblings Kayden, 9, and Svea, 15 months, is hoping to travel for treatment in August and expects to spend up to a month in the US.
“We are hoping to put in place a two-year programme (in Ireland), which will involve three hours’ therapy a day. That is what’s necessary for Tilara to have a good outcome,” Natasha says.
Fundraising for Tilara has exceeded €93,000 to date. There are opportunities to help out.
On June 10, a Red Bow Ball will take place in Midleton Park Hotel. For more info, see timefortilara.com. Donations can be made to: Ulster Bank, Midleton IBAN: IE09ULSB98549012720479 BIC: ULSBIE2D A/C Name: Time For Tilara.
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