A family from Basildon will be lending a helping hand to a ‘clause’ close to their hearts this Christmas.
Jenny and Steve Lowther and their children, Brandon, 12; Katie, eight and Rosie, three, will be helping to spread some festive cheer while starting Havens Hospices annual Run Santa Run event at Wat Tyler Country Park in Basildon on Sunday 4th December. The charity incorporates Fair Havens Hospice for adults and Little Havens Hospice for children where the family go for respite stays and support.
Brandon has Lennox-Gastuat Syndrome, a type of severe and rare epilepsy with multiple types of seizures, which he started showing symptoms of when he was 19 months old. Although Brandon started to say a few words as a toddler, like Mummy, Daddy, Car and Plane, the seizures meant he lost the ability to speak, his mobility is worse on some days more than others, he needs a wheelchair, hoists and he has to wear a protective hat. The nature of his epilepsy is particularly difficult to treat and he has profound learning difficulties.
Brandon was referred to Little Havens Hospice when he was five years old, giving him and the family the respite and support they need.
Mum Jenny, 31, says,
“Having a child who is ill - it’s the unknown, you have no idea what it’s like until you’re in it. Everything is harder, everything is a battle. Not only am I a Mum, I’m a nurse. It just puts a different perspective on life. Little Havens is an opportunity for us to be a family. It is our time. Without them Brandon wouldn’t have the support he needs, we wouldn’t have the break we need. Where else would we get that? Where else would we go?
“I don’t know if I can put it all into words. Little Havens does make every day count and we do. It’s about having time, it’s about not having to worry, it’s about knowing if Brandon was coming to the end of his life, we’ve got somewhere. It’s about being a family one last time. I didn’t think we realised how much more that would become important to us. It’s a feeling, about grabbing that moment, possibly the last chance you’ve got of being together. It’s about appreciating the moments with your family because you don’t know when it’s going to end. For us, it’s just….love.”
On Sunday 4th December the family will sound the klaxon and set runners on their way in Havens Hospices Run Santa Run and Reindeer Run event, which they will also take part in.
“Saying thank you to Little Havens just isn’t enough. I ran the London marathon for them in April and will continue to support them in any way I can. Little Havens doesn’t just mean the world to me and Steve or Brandon, they support Katie and Rosie as well.
“Katie loves the arts and crafts corner, and ‘Friday Bob’ one of the volunteers, she gets so excited to see him and all of the nurses and carers. Rosie thinks it’s just one big playhouse, she loves jumping in the ball pool. They instantly play with the other siblings, it’s one big adventure for them, they never want to leave. The children can all do messy play together, they have tables which can be the right height for him, and enough hands to help him so I can actually do something with the girls. The girls can run around the gardens, Brandon likes going on the trampoline; it’s enclosed so he can just bounce. We can’t take Brandon to public swimming pools but we can use the pool at Little Havens as a family.
“The girls are both looking forward to taking part in the Reindeer Run and sounding the klaxon to start the event. It’s going to be a really fun day out for all of us while supporting something so important in our lives.”
Every one taking part in the 4.5k Santa Run will receive a Santa suit to run in and children will get reindeer antlers. Children will also get reindeer antlers and a flashing nose when they take part in the 2k Reindeer Run.
In addition there will also be real Reindeer from Paradise Wildlife Park and Father Christmas in his grotto, a snow machine and Christmas characters. The event starts at 11am.
To sign up or for more information visit havenshospices.org.uk/santarun.