Community has helped us build Daniel's forever home

By Mary Dennehy

A LOCAL mother has this week stressed how grateful she is to live in Tallaght, after the community banded together to help build a forever home for her young son, who has a rare genetic disorder.

Living in Riverview with his dad Keith, mam Sinead and and big sister Shauna, Daniel Tighe (12) is one of around 40 children in Ireland born with a rare genetic disorder called Sotos Syndrome.

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Daniel with his sister Shauna

As a result of Sotos Syndrome, Daniel has low mobility, severe epilepsy and is non-verbal and incontinent.

The disorder also causes rapid growth during the early years of life, which puts a lot of physical strain on both Daniel and his family.

To continue providing Daniel with the best quality of life, Sinead, Keith and Shauna started a campaign called Daniel’s Voyage in January 2017 to help raise money towards an adaptation – which would support them in continuing to care for Daniel at home.

Less than a year later in December 2017, the Tighe family surpassed their fundraising goal of €100k, after the community united in support – and helped create a forever home for Daniel, who will turn 13 in March.

The ground floor of the Tallaght home is now fully wheelchair accessible, with a new unit built onto the back of house, which consists of a bedroom, play area and wet room for Daniel.

The new unit has also been fitted with a hoist, which will make it easier for the family to care for Daniel as he gets older.

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Sinead holding the hoist in the bedroom

Speaking with The Echo, mam Sinead said: “The adaptation has taken a huge weight off our shoulders . . . our home just wasn’t functional for Daniel.

“The house is more spacious so it’s easier for Daniel to move around, and he loves his playroom.

“Daniel’s area is built off the kitchen and has sliding doors into the house and out into the garden.

“It’s completely level for Daniel so he can easily get in and out of the garden to play with the dog.”

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Daniel's bedroom

Sinead stressed how the design of the house will allow for the introduction of different features as Daniel grows and his needs change, with a sizeable amount of space also allocated to the wet room to support Daniel as he grows into an adult.

“The community has helped us to build a forever home for Daniel”, Sinead said.

“The adaptation helps us to prepare for the next stage of Daniel’s life . . . and allows him to be more independent.

“There is loads of learning for him in the new house, and his occupational therapists guides us on how we can train Daniel into his new home.”

The family moved out of their house for eight months while the adaptation took place, returning home just before Christmas.

“When we returned home Daniel knew it was his new bed, and he was happy and hugging our builder Niall [Finn].

“We couldn’t have done this without Niall Finn Construction – he went above and beyond.

“He understood what we needed and made it his business to get to know Daniel and learn about the struggles we had as a family within our home.

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Daniel with his parents Sinead, Keith and sister Shauna

“We trusted him and he made everything easier for us.”

Speaking with The Echo, Sinead, who is a former Tallaght Person of the Year, was overwhelmed when trying to express her thanks to the community.

“The compassion people had for Daniel and our family was huge”, Sinead said.

“People really tried to understand our life, and the struggles we had as a family in our home.

“We really can’t thank people enough.

“I’m so glad we asked for help and so glad I live in Tallaght, our great community.

“We’re grateful and very humbled and overwhelmed by it all . . . and we’re sending a huge, heartfelt ‘thank you’ to everyone.”

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