Tallaght mother to run marathon while pushing son with rare genetic disorder

By Mary Dennehy

A TALLAGHT mother is to run the Dublin marathon while pushing her ten-year-old son, Daniel, who has one of the most severe cases of a rare genetic disorder recorded in Ireland.

Sinead Tighe will push her son more than 26 miles this October in an attempt to raise up to €100,000 to convert their home in Riverview, which lies off the Kiltipper Road.

As previously reported in The Echo, Daniel is one of around 40 Irish children 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.

Sinead 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.

To continue providing Daniel with the best quality of life, Sinead, 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,” Sinead 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.”

Grants for home adaptations are means-tested and, according to Sinead: “You’d have to be earning nothing to get any funding and even if you were earning nothing, you wouldn’t even get the full amount.”

In the past three months, more than €17,000 has been donated to the family’s fundraising drive.

“We can’t thank the community enough,” Sinead said.

“The community has really gotten behind us and supported us in so many ways, I’ve received beautiful messages of support, people offering to hold fundraising events and donate equipment to the extension when completed.”

Sinead is now training for the Dublin marathon, during which she will push her running partner Daniel.

“I started to run with Daniel a few years ago and after bringing him out on his first run, I could see the joy on his face. He can’t talk but his smile spoke a thousand words,” Sinead said.

“I finally found something he loved and from that day he became my running partner.”

For further details or to donate, visit Daniel’s Voyage Facebook page or email sineadtighe@gmail.com