💜 Supporting NI Children’s Hospice through the Purple Dash 💜

On 27th June we have decided to take part in the Purple Dash for NI Children's Hospice. Myself & Charlie (Age 6) will push Robbie around the Titanic Slipways for their first ever colour run.

Our son Robbie was born 26th May 2021...a perfect bundle of joy. Within 24hrs Robbie started to take seizures. He was then moved to SCBU, then at a week old, transferred to Craigavon NICU and finally to the Royal Belfast Hospital for Sick Children where he stayed for a further 3 months. Watching our newborn baby have constant seizures and turning blue is something you can never be prepared for.

Finally after 3 long months we got genetic screening results back, confirming that Robbie has a rare genetic condition called KCNQ2 DEE. There are only 700-1000 cases known worldwide, 200 of which are on the severe end of the scale. Unfortunately Robbie is one of these 200. He has very complex needs, severe drug-resistant epilepsy, dystonia, bilateral dislocated hips, severe visual impairment, receives nutrition and medication through a peg tube and requires around the clock care.

We were first introduced to the NI Children's Hospice in 2023. It was a very difficult time for us as we assumed ''Hospice'' meant the beginning of the end for our little boy. But we were very wrong!

''NI Children's Hospice provides specialist care and support for babies, children, and young people with life-limiting and life-threatening conditions across Northern Ireland.''

Being a parent of a child with such complex needs becomes a 24/7 job. A job with few tea breaks and little sleep. BUT a job we take such pride in. And handing over that trust to someone else can be very difficult. With the Hospice it was different, it became a special place for our family. Robbie's siblings also get so much fun and support through the NI Children's Hospice. This incredible place offers expert 1 to 1 care along with therapies, fun and comfort. When Robbie attends NI Children's Hospice they tailor activities to his specific needs, while also having fun, making memories and sending us gorgeous pictures of our special boy. For us as parents it provides respite to recharge our batteries and dedicated time with our other children, while still having the reassurance Robbie is being cared for by people who truly understand his needs.

Every pound raised will help ensure that the NI Children's Hospice can continue to provide essential care, support and respite for children with complex needs and their families.

Thank you for your kindness, generosity and support!

Stacey, Charlie & Robbie