Colour Run to help Shea (5) travel for liver transplant
The community of Muirhevnamor is rally around a young family as they prepare to bring their five year old son to London for lifesaving surgery.
Little Shéa Donnelly was diagnosed with a rare liver disease called Alagilles Syndrome when he was just seven weeks old and now needs a liver transplant.
Now Youth Work Ireland Louth's Amplify project are donating funds raised through their annual Colour Run which takes place on September 8 to help his parents Dannyboy Donnelly and Stacy Gogarty of Grange Drive as they prepare to bring Shea to London for surgery in King's Hospital.
Shéa, who has a twin brother Caodhan, was born in Our Lady of Lourdes Hospital, Drogheda. He spent the first six weeks of his life in the Drogheda hospital and was then transferred to Crumlin Children's Hospital where his parents were told that he has Alagilles Syndrome.
'It affects his liver and heart,' explains his mum Stacy. 'It causes liver damage because of abnormalities in the bile ducts.'
The condition, which affects approximately one in every 100,000 babies, has resulted in Shea suffering from jaundice, a heart murmur, pulmonary stenosis, poor growth and severe itchiness.
'It's a very rare condition and we don't know anyone else who has it,' says Dannyboy.
'His itch is so severe that he has many sleepless nights, sitting up scratching,' says Stacy.
Shéa also has to be fed through a peg which Stacy does several times during the day and through a feeding machine at night.
When he's at school at Gael Scoil, where his is going into Senior Infants this September, the Special Needs Assistants look after him.
He also has to take daily medication and has a bile bag to remove excess bile from his system.
Shéa has had numerous hospital appointments during his short life, but Stacy says that he is a happy child who enjoys playing with his brothers and likes Lego and other toys.
As he gets older though, he is conscious of his condition and Stacy explains that the transplant will allow him to develop like other children and he will be able to eat normally.
Shéa has been on a waiting list to have a liver transplant at Kings Hospital, London for the past eight or nine months and dad Dannyboy says they are keeping their fingers crossed that he will have the operation before Christmas.
'We have to let the ambulance services know where we are if we go out of the Dundalk area in case we get the call to bring Shéa to London,' adds Dannyboy.
When in London, they are hoping that they will get a place in the Ronald McDonald House, or else they will have to find their own accommodation.
While the cost of Shéa being transported to the hospital is covered, the family will have to pay for their own travel arrangements on the way home.
The family are extremely grateful for the support which they are getting from the local community and especially Youth Work Ireland Louth's Amplify project who are organising the Colour Run.
Dannyboy has often had to take time off work when Shéa has had hospital appointments or has been in hospital for surgery.
They have three other boys, Kevin (10), Shéa's twin Caodhan, and two year old Dannyboy, and are lucky to have the back-up of both grandmothers who live nearby.
The 5km Colour Run and family fun day being organised by Youth Work Ireland takes place on Sunday September 8 from 1.30pm, at DkIT, Hoey's Lane.
Tickets for the event are available through www.eventbrite.ie