Brandon is a happy, cheeky, loved boy who loves his cuddles, “a gentle giant” as his mum Jenny, who isn’t much taller than her son, describes him.
He lives in Basildon with Jenny and his dad Steve. He has two sisters, Katie, 7, and Rosie who is 2.
Brandon is a very unique eleven year old boy. He 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 as a toddler Brandon started to say a few words, 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 is not going to get any better. We never find someone quite like him. He seems to take the rareness of things to a new extreme. I don’t know, day to day what my life is going to be like, but as his mum I just have to pull my socks up and get on. I feel guilty for a lot. He doesn’t understand. He hasn’t asked for this. I can’t explain it to him. I feel like I do my best. If I know I give him my best, and I give him my everything then I know he’s alright, I know he’s happy.
“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. Brandon’s seizures are so unpredictable, there’s no warning sign. As he’s getting older they are much harder to control, and if he doesn’t come out of one - it could kill him. We need a lot of people around us who understand the impact it has on our lives.”
Brandon was referred to Little Havens Hospice when he was five years old, giving him and the family the respite and support they need.
“The families at Little Havens are all there for the same reason, it’s our community, it’s all normal for us. You never feel like you’re not wanted, it’s warm, it’s homely, it’s comfortable. We get to have a good night’s sleep. We can be a family. And Brandon is somewhere safe. It is our time. Without Little Havens, 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? We’d be totally lost without them.”
Caring for Brandon is 24/7 but with the support of her family, Jenny has found time to train to run her first London Marathon on Sunday 24th April 2016 as part of Team Havens.
“I owe it to Little Havens, they put their time in us and we are just so, so grateful. Yes I’m tired but other children and adults have to battle with their condition every day of the year, if it takes a few months of my time being tired and crying like a mess then I’m going to do it. No one said I have to, thank you just isn’t enough, it’s about giving back.”
“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.”
If your child has been diagnosed with a life-limiting illness, Little Havens Hospices can help. Find out more about the care and support we provide here.