Neighbours rally round sister and brother with rare disorder

OVER €3,500 was raised by Sinead Tighe and her son, Daniel, who has a rare genetic disorder, for a local family with two children who have life limiting conditions to help them to ‘make memories’ in the coming months.

Liz, 41, and Kevin Dickson, 40, and their children Tommy, five, and Grace, four, live off the Kiltipper Road in Riverview, Tallaght, where their neighbours include the Tighes.

Last December, Grace was diagnosed with a rare, incurable genetic mitochondrial disorder after she developed a squint in her eye and issues with her mobility.

Tommy was diagnosed with the same condition the following April, after developing balance and coordination issues. The children are two of only three people in the country with the rare condition.

Grace and Tommy’s mam, Liz, told The Echo: “They have the exact same diagnosis but they have very different presentations.

“Grace has visual impairment and mobility issues. She uses leg braces and a wheelchair. She has those challenges but she’s bright as a button.

“Tommy’s presentation looks a bit more like dyspraxia or a form of muscular dystrophy. His issues are more around coordination and strength.

“They both have visual impairment and mobility issues but they’re well able to play and have fun. They still want to do all of the things that typical kids want to do.”

Grace and Tommy

There is no clear prognosis or trajectory for the condition, according to Liz, beyond it being life-limiting. As such, the family’s main focus is on creating happy memories for the children.

“We just have to take every day as it comes,” explained Liz. “They use the term ‘life limiting’, but they can’t give us a trajectory of the disease. They don’t know how it will progress.

“The disease doesn’t follow a pattern. We have to take it as it comes, and look after Grace and Tommy and give them a great life and great memories while they’re still well enough.”

The community has rallied around the family to raise funds for a fundraiser set up by the children’s father Kevin’s family in Scotland, to enable the family to fund trips and therapeutic care for the children.

Over the summer, one of the Dicksons’ neighbours, Lee Shortt, and his friend Ross Collier took on a 48km running challenge for Grace and Tommy and raised over €5,000 for them.

Most recently, another one of the family’s neighbours, Sinead Tighe and her son Daniel, completed the Dublin City Marathon in aid of Tommy and Grace and raised €3,837 for them.

Sinead has seen first-hand the impact of community support, as her 14-year-old son Daniel has a rare genetic condition called Sotos syndrome.

The community previously raised over €100k to enable her family to adapt their house so they could continue caring for Daniel in their home.

Sinead said: “I went down to see Liz and Kevin, and to give them my support as someone with a child with difficulties.

“We got great support from the community, so every year we fundraise for someone in our area.”

This year, the Tighes chose to raise money for Grace and Tommy as they said it’s important for them to “capture everything they can in their lives now because no one knows what’s around the corner”.

For Liz, who works as a secondary school teacher, and Kevin, who’s a youth justice worker for Foróige, the fundraiser alleviates the financial pressure on them because they both had to stop working full-time to bring their children to regular hospital appointments.

They’re planning to get a granny flat built onto their house for when Kevin’s family come over to visit from Scotland, and they’ve been able to get a private occupational therapist for the children and organise trips to Lapland and Disneyland with the money raised.

“People have been incredibly generous and kind,” said Liz. “We’re blown away by it. There’s a real sense of community, care and generosity and it really helps us because we know we’re being supported.

“It’s really hard to say thanks to everyone and tell them exactly how much it means to us.”

Donations are still being accepted on Tommy and Grace’s GoFundMe page, under the title ‘Memories for Grace and Tommy’.