Tallaght family seeking support to help better the quality of life for their son Daniel
By Mary Dennehy
A TALLAGHT family is seeking the community’s support in providing a better quality of life for a nine-year-old boy, who has one of the most severe cases of a rare genetic disorder recorded in Ireland.
Living off the Kiltipper Road in Riverview estate, Sinéad and Keith Tighe’s son Daniel is one of around 40 children living in Ireland born with a rare genetic disorder called Sotos Syndrome – a disorder that causes a number of issues, including rapid growth during the early years of life.
Sinéad told The Echo that Daniel has severe intellectual disability, cortical visual impairment, sensory processing disorder, overgrowth, low mobility, severe epilepsy and is non-verbal and incontinent – with the nine-year-old also peg-fed due to feeding difficulties.
Sinéad said: “Our daily life is a struggle but we do our very best for Daniel and try to give him the best quality of life that he deserves.
“The care we have to give daily is getting harder as Daniel is getting bigger.”
To continue providing Daniel with the best quality of life, Sinéad, Keith and their daughter Shauna (12) need to adapt the downstairs of their home, and they’re looking to the community to support their fundraising drive.
“We have to completely adapt the downstairs of our home to help with Daniel’s needs and to give him a safer and better quality of life,” Sinéad told The Echo.
“As a result of the severity of Daniel’s epilepsy and the regression of his mobility, it is no longer safe for Daniel to be upstairs in our home.
“We need to provide Daniel with everything he needs on the ground-floor level and this will be a build for life, as Daniel will grow to around seven foot.
“We need to make our house wheelchair accessible and build a unit onto the back of our house with a bedroom and wet room for Daniel.
“We also need to make the whole downstairs wheelchair-accessible and put in a hoist between all of the rooms, as I won’t be able to lift Daniel as he grows.”
She added: “We weren’t eligible for a grant in the past as Keith was working, but he lost his job last year so we will reapply again.
“However, we’re not hopeful that any grant if provided will in any way near cover the cost of the work.”
The Tighe family is planning to run the Dublin Marathon in October pushing Daniel, and are also inviting the community to organise fundraisers over the course of the year.
“I started to run with Daniel a few years ago . . . and after bringing Daniel out on his first run, I could see the joy on his face. He can’t talk but his smile spoke a thousand words.
“I finally found something he loved and from that day he became my running partner . . . and we do the Park Run in Tymon Park every Saturday and take part in Brother Pearse Athletic Club events.”
Alongside raising money for the adaptation, the Tighe family hope to raise awareness of Daniel’s journey through a Facebook page called, Daniel’s Voyage.
Sinéad said: “Raising awareness is also really important for us and showing that we can give kids with special needs a great quality of life, and their families too.”
For further details, visit the Daniel’s Voyage Facebook page.
