Daniel’s Voyage receives €11,000 from charity tractor run
By Aura McMenamin
The mother of a boy with a genetic disorder was left overwhelmed on Saturday night after receiving a cheque for €11,000 towards the in-home care of her son.
The Tighe family was given the money following the Bohernabreena Tractor and Vintage Run in July – an annual fundraiser which sees tractors drive 14 km through the hills of Bohernabreena and splits the money raised between two chosen charities and causes.
Antoinette Grimes and Donie Anderson present Sinead and Keith Tighe with a cheque for €11,000
Sinead Tighe accepted the cheque on behalf of Daniel’s Voyage, which hopes to raise €100,000 for the refurbishment of their home to provide the necessary equipment and space for her severely disabled son, Daniel, who was born with Sotos Syndrome.
Sotos Syndrome is characterised by excessive growth and intellectual disabilities. However, Daniel is on the more severe end of the spectrum and suffers from visual impairment, limited mobility and epilepsy. He is incontinent and unable to speak or feed himself.
The Kiltipper family have to take into account Daniel’s disabilities when planning for his future, as well as their own physical limitations.
Sinead is Daniel’s primary carer, in charge of feeding him, changing his diaper, brushing his teeth, and carrying him. She also said that Daniel has sensory issues and becomes overwhelmed in public easily, leading to temper tantrums.
Sinead said Daniel is expected to grow well over six feet tall, meaning the physical strain of carrying him and caring for him during temper tantrums will be harder to cope with as time goes on.
The aim of Daniel’s Voyage is to raise money to safe-proof their home. They hope to renovate their home to become open plan and bring in necessary equipment, including an overhead hoist attached to the ceiling that will allow him to move around the room without as much assistance from me.
Sinead explained: “It’s up to me to bring him down the stairs. He’s able to go up the stairs by himself, but will never be able to go downstairs without me. It has to do with his visual impairment.
“He would never use a chair lift because of his epilepsy – it would be triggered.”
Sinead said that she went through a ‘dark period’ but found solace in local fitness groups and running clubs. She discovered that Daniel enjoyed running too.
She ran the VHI Women’s Mini Marathon in June and is set to run the Dublin City Marathon in October. When Sinead runs, she pushes Daniel in his chair – an activity she said they both enjoy. When the mother and son run together, they’re both at peace. She said that discovering an activity they could do together was a blessing as was the acceptance of her and Daniel by her fellow runners at Brothers Pearse Club.
She said: “You have a lonely world as a carer. I turned to fitness and started running to cope.”
Daniel’s Voyage has been going since January and since then, the family has been aided by the community. O’Regan’s Pharmacy raised €4,000 and there were benefit nights in the Long Mile Inn and Molloy’s.
Sinead runs the Daniel’s Voyage Facebook account. “I speak for Daniel. I update people with the positive news we get, instead of the negative.”
Sinead was contacted by Antoinette Grimes, who sits on the Tractor Run committee, and was told she wanted Daniel’s Voyage to be one of the causes supported by the Run.
The €22,000 raised by the Tractor and Vintage Car run was a complete surprise for Sinead. She gave a speech at St Anne’s GAA Club on Saturday, where she said she was overwhelmed and overcome with emotion after seeing the generosity of her community.
“I hate putting my hand out, I hate asking. But sometimes you have to. I couldn’t thank people enough.”
Sinead said she’s proud to be from Tallaght and is ‘lucky to have been born here’. She said: “This is a great place to be. The community came together and bought into our story and supported us.”
