As part of Children’s Hospice Week, the charity is raising awareness of the importance of its services to local families across the North, and in particular the support provided to Fermanagh families, where and when they need it most by Horizon West at Killadeas.

The hospice also provides friendship and support to their families. These children do not have a life expectancy of longer than 18 years and they have very special care needs. They may suffer from life-limiting progressive illnesses such as Muscular Dystrophy or rare genetic disorders such as Batten’s Disease, or life-threatening illnesses such as cancer and heart disease. Such conditions require substantial and in many cases 24 hour round-the-clock care. This puts an enormous strain on family life, especially if more than one sibling is ill. At times, families can feel overwhelmed by the situation, both emotionally and physically.

For one family, Jonathan and Charlotte Kerr, from Shore Road, Enniskillen, it will has meant that their 17-year-old daughter Sophie hasn’t had to endure the rigorous 180 mile round trip to Horizon House in Belfast which she had been attending since the age of four.  

Sophie, a pupil at Willowbridge School, suffers from what is called, a life limiting condition. 

“Sophie has an undiagnosed illness which affects her both physically and mentally as well as having epilepsy,” Charlotte explained. “This condition means she is potentially life limited to childhood and requires a lot of nursing care.”

Charlotte says the staff at the hospice are like a second family because they know Sophie so well. 

“I can leave her with them safe in the knowledge that if there’s an issue they will know exactly what to do. 

“Sophie gets so much out of the hospice care. There’s definitely a huge difference in her since she started attending. For a child who we were told didn’t understand things, when we take her to the hospice she knows the road and realises exactly where she is going and who to see. You can see the expressions change on her face instantly with a big smile.    

“Her head is hanging when we’re come back to take her home. When you walk into the hospice you can hear her laughing but then when she sees you she knows that it’s time to leave.”  

Charlotte says that without Horizon West, she would simply have to struggle on. 

“It gives me a chance to go out with my two sons, Scott (13) and nine-year-old Ben and do things I couldn’t if I had to look after Sophie like going to the beach, cinema or a sleepover. It has meant so much to us to have hospice services right on our doorstep not just for myself but because it also provides a support network for the boys.”