Hey! Please help me to raise funds and help a very special person and a very special cause. My fellow Brothers Pearse clubmate and friend Sinead Tighe lives in Tallaght with her husband Keith and her two children Shauna 13 and Daniel 9. Daniel was born with a rare genetic disorder called Sotos syndrome. He has the severest form of this syndrome within Ireland. The syndrome varies on an individual case basis, 1 in every 15,000 to 20,000 are affected with this condition and about 10-20% have the severe form. Daniel suffers with the following issues as result of this syndrome: he has severe intellectual disability, he is non-verbal, has cortical visual impairment, sensory processing disorder, bone overgrowth, feeding difficulties, severe epilepsy, he is peg fed and incontinent.

Daily life is a struggle but Sinead & Keith do their very best to give Daniel the quality of life he deserves. The level of care Daniel requires is getting more and more intense as he is getting bigger.

The level of care, dedication and love these guys have for Daniel is truly inspiring. Their whole lives revolve around helping him and they deserve a little help from all of us, hopefully we can make things a little easier.

At the moment they live in a modest 3 bedroom house and the downstairs of their home needs to be completely adapted to help with Daniel’s needs and give him a safer and better quality of life. As a result of the severity of Daniel’s epilepsy and the regression of his mobility it is no longer safe to have Daniel upstairs in the home. They need to provide Daniel with everything he needs on the ground floor level - this will be a build for life. They need to make the house wheelchair accessible and adapt rooms into a bedroom and wetroom and put in a hoist between these rooms.

If you can help in any way with the fundraising no matter how small it all helps and is greatly appreciated. You can also look up Sinéad & Keith’s Facebook page “Daniels Voyage” to see their lovely boy and share in the journey so far.