All we want is for our beautiful, intelligent mischievous little girl to be pain free

The community in East Cork is rallying around a family who are raising funds to allow their five-year-old daughter to undergo life-changing surgery in the US, writes MARTINA O’DONOGHUE
All we want is for our beautiful, intelligent mischievous little girl to be pain free
Tilara Costa-Holmes Fundraiser

AS THE proverb says, it takes a village to raise a child. Never is this truer than when the child has special needs, requiring extra equipment, care or medical intervention. The child has the best chance of becoming a healthy adult when the entire community takes an active role in contributing to his or her needs.

This is the case in East Cork, where locals have been coming together to help raise funds for Tilara Costa-Holmes who has spastic diplegia cerebral palsy, a neurological condition that permanently affects muscle control and coordination.

Her movement is severely restricted, so walking, sitting unaided, crawling, and rolling are all out of the question; activities most children take for granted.

Tilara is described by her parents, Stephen and Natasha, as “a beautiful intelligent, mischievous, strong-willed and determined five-year-old little girl”.

But they are devastated to witness her ongoing, daily pain and how it impacts her life.

“We only found out when she was 12 months old”, says Natasha, originally from South Africa but who has settled in Ireland for the past eight years in Stephen’s home town, Midleton.

“She wasn’t meeting her milestones. From about eight months she wasn’t sitting. That rang alarm bells.”

Eventually, an MRI scan revealed the truth.

While Tilara receives mainstream education at St John The Baptist primary school, her ability to fully function is impaired by her troubled nights. Her increased muscle tone causes painful spasms which affect her sleep, so she wakes up numerous times in the night. The pain and sleep deprivation then affects her ability to reach her full potential in her daily tasks.

Tilara has physiotherapy but it isn’t enough to alleviate her painful spasms. However, there is another option out there. Through Enable Ireland, Natasha has met children who have had Selective Dorsal Rhizotomy (SDR) surgery in the US. Tilara has been accepted by Dr T.S. Park, a specialist in paediatric neurosurgery, to undergo the life-changing procedure at St Louis Children’s Hospital in St Louis, Missouri.

Dr Park has performed this surgery on thousands of patients from 70 different countries, refining and studying the procedure more extensively than any other surgeon.

A Facebook group also appears to be playing a role in attracting international families to Dr Park, as parents share information and success stories. Natasha is familiar with it.

“He (Dr Park) will comment himself and engage with the parents. It’s fantastic that he engages with everyone. You don’t get that very often. He’ll respond to good and bad.”

The surgery involves cutting sensory nerve fibres at the base of the spine to permanently relieve muscle spasticity, or rigidness, caused by cerebral palsy.

What would this mean for Tilara? It’s a question her parents answer on their Time For Tilara website: “For Tilara, the outcome we hope for is a ‘pain free life’.

“The possibility of improved mobility, independently sitting or the ability to stand or walk for short durations, with the aid of functional devices, are all things that may be possible, but we don’t dare to dream of them — yet.”

Before that dream has a chance of coming true, the family faces the challenge of raising €140,000 within the next five months.

“She’s on a waiting list for August and they’ll let us know in May. It’ll happen not later than December,” says Natasha, who is also mum to Kayden, aged nine, and Svea, aged one. SDR requires extensive aftercare, with a commitment to a two year rehabilitation process, including intensive physiotherapy, hydrotherapy, hippotherapy, plus the need for specialised equipment to maximise the outcome.

With a

page set up at the start of February and the first fundraising event held this month, the race is on to raise the money. 

That first event was The Earthquake Cycle in Midleton, so called since Cork-based New Zealander Philip Cunningham first devised the charity cycle in response to the devastating 2011 earthquake in his native Christchurch. He has since organised it annually for different causes.

Sponsored by Cully and Sully, Cafe Velo, Orihuela Costa Cycling, VeloRevolution, An Rothar bike shop, Quickshop, Nora O Driscoll of The Mill Grill, The O’Shea family and Kearys, it raised €4,445 for the cause.

Natasha and Stephen are also grateful for the committee, Cullen Allen from Cully and Sully, Clive Read from Kearys, Andrea Gunn from Midleton Chamber, Caroline Dooley from Keanes, Noel McDonagh, Ann Kelly, Sile Stack, Stephen Holmes and Eileen Kearney.

All part of that ‘village’ that is helping raise a child.

The next fundraising event will see chefs Darina and Rachel Allen giving a cookery demonstration at The Grainstore in Ballymaloe on March 23 at 7.30pm.

Tilara is aware of what this surgery might do for her, having already asked her mother if she will be able to do ballet afterwards.

While Natasha is realistic about the attainable goals which will be set for Tilara, she is keeping her eye on the prize.

“She will be able to go to the toilet by herself or pick something up when she drops it, as SDR gives kids more mobility.

“But being pain free — you couldn’t ask for more.”

For more information see www.timefortilara.com or facebook.com/timefortilara.

To donate see www.gofundme.com/time-for- tilara.

Tickets for the cookery demonstration (€30) are available from Alma King: 021-4652067; Anne Marley: 087-9900624; or Ina Holmes: 021-4668485.

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