My name is Jenny Thompson and I’m the Deputy Head of Children’s Services at the Children’s Hospice.
People always say to me, “I couldn’t do your job, it must be so sad” but that’s not how I see it at all. Yes, there are really sad times, but there are many moments of absolute joy. The babies and children that we care for are so very special, and I am grateful every day that we can make a difference in their little lives. I know they make a huge difference in mine!
I’m also so proud to be part of the amazing care team for children. Not only do we provide specialised care for children with medically complex needs in Horizon House - that’s our children’s unit, but we also care for children and their families in their own homes all over Northern Ireland.
We are always there for our families, giving them time to be together - not as carers, not as stressed and worried mums and dads, but as a family away from the normal pressures of their lives - simply being together - something most of us would take for granted!
All the parents we help have been given a diagnosis for their child of a life limiting condition - which means that they are unlikely to live long enough to move into adulthood.
Along with the challenge of facing such a diagnosis, the children and their families live with the complicated symptoms their condition may cause. Symptoms can affect every aspect of the child’s life, their development or movement, their ability to speak, being able to eat independently and how they sleep - if at all!
While some of these conditions can be managed to give a different kind of normal life, the really difficult part for parents is living with the uncertainty of how symptoms can change almost on a daily basis. Each time symptoms change, it can threaten the life of their child. Seizures or difficulties with their breathing are not uncommon, so families have to be ready to manage a medical emergency at any time.
The way these children are cared for is so important to their lives, and the lives of their family. With our specialised team of nurses, doctors, physios, pharmacists (and I’ve only named a few of the entire team) - we are unique in the help we can give.
I want to take this opportunity to share Sophia and Sebastian's story - two amazing and inspirational young kids who avail of our services.
They are two of the most adorable children, they are so close that when they come to stay, they don’t even want separate bedrooms! Their Dad Matt and Mum Nicole have shared some of their story with us. Nicole has simply said, “we are their lifeline” - this is such a powerful statement. I believe parents of children with complex health conditions deserve our help, they deserve to have the care and support we can provide for their entire family.
To read their story, click here.
How you can help
I am kindly asking that if you can, that you help us today. As you know costs are rising everywhere - and we are no exception. To give you an idea of the costs we have - an hour of specialist care for a child costs £37.25. It takes £66.34 to provide a child with a session in our hydrotherapy pool, which is sometimes this is the only way a family can have water fun together, and it costs £155 for a specialist mattress for our children’s special beds.