JJs story and what the hospice does for us.

JJ is six years old. Many of you may know JJ and his story but for those who don't JJ has cerebral palsy and life limiting disabilities due to brain injuries sustained at birth. JJ spent many weeks in neonatal care after he was born and we were told initially that he was unlikely to survive his injuries. JJ kept fighting and after 2 months he left hospital and came back home to Tullylish. JJ requires 24 hour medical care and has had many ups and downs since then. He will never have the life we would have wished for him but he is a little Iron Man and has kept fighting.

JJ loves stories and music therapy. He attends Donard School in Banbridge twice a week (we have to give a shout out to the amazing staff at Donard who are so good with JJ). JJ loves the all the sensory activities and fun he has at school. He is a little ray of sunshine and we are so proud of him. JJ adores his big sister Evie and we all adore him.

Coming to terms with what happened to JJ has been difficult and it is a very steep learning curve when your child has complex medical needs but NI Children’s Hospice have been by our side from the start. Along with our brilliant community nursing team the hospice provided a light in the dark when we really needed it.

JJ receives Hospice at Home respite care every week where he is cared for at home by the hospice’s specialist nurses. He also visits the hospice’s Horizon House several times a year for respite stays.

The respite we receive at home from Hospice at Home allows us to do everyday things that are not always possible due to the level of JJ’s care needs knowing that JJ is safe and cared for by nurses who are kind and caring and absolutely brilliant with JJ. It also allows us to spend quality time with our daughter Evie. The hospice’s sibling support has been invaluable to us at some of our most difficult times.

The in-house respite at Horizon House provides a warm and caring environment. With facilities such as a therapy pool, art room, soft play, music room and sensory room it is a haven for JJ to explore new experiences in a safe and accessible environment. It also provides a safe space where care needs can be temporarily lifted off the shoulders of parents/cares allowing them to have a short time when daily life is not dictated by medicines and care needs.

The need for the Hospice’s services can’t be overstated. They provide family and community support, in-house care, respite at home and bereavement support to families across Northern Ireland and for many families under their care they are a lifeline.

What is the challenge:

After the success of our 2021 ‘JJ’s Walk: The Road from Croker to Tullylish’ when as a group we raised £76,000 for NI Children’s Hospice, and given the current government cuts to healthcare and Hospice services, we are going to undertake an even bigger challenge.

Cycling around the 9 county grounds of Ulster in 3 days (just over 300miles) where Vincent will score a point (easier said than done given Vincey's footballing ability!) at each of the grounds.

Who is taking part:

Vincent Doran (JJ's Dad)

Niall McCartan

Brian Campbell

Paul Brady

Paul McGrane

Gavin McEvoy

Phily Grew

John McGrane

Jonathan Quinn

Tom Morgan

Gary Chambers

Conal Martin

Andrew Hanna

Jarly Quinn

Simon Cahill

Chris O'Carroll

Shane O'Hanlon

John McKinley

John Mackin

Martin Fitzsimmons

Aidy O'Gara

Paul McCullagh

Kieran Grimes

Damien Rafferty

David Graham

Noirin Hayes

Una Mone

Aidan Cullen

Des Judge

John McCusker

Dermot O'Hanlon