“Reuben was diagnosed with a rare genetic condition called bilateral polymicrogyria. He was 13 months old when we first found out. His condition has caused 4 limb cerebral palsy, uncontrollable epilepsy and lots of other complex medical needs.
Unfortunately, as Reuben has got older his health is deteriorating and although I know he struggles with constant pain he still remains to be that gorgeous, happy social boy he has always been.
We have been on such a rollercoaster with Reuben and spent many a night sleeping in hospital chairs but it’s truly a journey I would take time and time again for him.
Reuben was referred to Little Bridge House in 2016. Before going for the first time, I anticipated what it was going to be like because when you hear the word “hospice” you instantly think of the end of life and the sadness and emotions that come with it. The reality was that from the minute Reuben and I went through the doors, it was a place of love, laughter and happiness. It’s bright, modern and has beautiful grounds.
The Care Team are amazing and so supportive and nothing is too much trouble for any of them. When we got there Reuben had his own room and everything was attuned to Reuben right down to his favourite books, DVDs and even room decoration which is Toy Story.
Once you arrive, the Care Team take over Reuben’s care as much or as little as you would like. The parent accommodation is close by and is like staying in a 5-star hotel. Nothing is too much trouble and the staff’s attention to detail is second to none.
It allows us to meet other families and share our experiences which isn’t easy in day-to-day life. We can eat together, laugh, cry or talk; whatever is needed. Some good friendships have been made for parents and children alike.
The cooked meals are all homemade and fantastic. You never leave hungry and if anything you’re a size bigger! You walk in and roll out! It is a time where I can be fully Reuben’s mum where we can enjoy playtime, activities and the outside world and I can focus on making precious memories whilst not having to feel like I’m his nurse.
Even when Reuben and I are not at the hospice, we are still greatly supported by them and even get home visits. The siblings get looked after so well with activities and support as they often take a back seat to their brother or sister due their complex care needs.
I recently ran the Bristol half marathon and have signed up to do the RUN Barnstaple 10k in September to raise money to give back so that Children's Hospice South West can continue to do their amazing and supportive work with families like ours.
We will continue to support CHSW and raise as much money as we can in the future. Our lives would be even more difficult without them.”