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