7 year old Faith has Dravet Syndrome, a rare form of epilepsy which causes autism, ataxia, severe seizures and an increased risk of SUDEP (Sudden Unexpected Death in Epilepsy). Faith's parents, Nancy and Martin, spoke to us about the absolute need for respite, and the fear they live with every day caring for a child at risk of SUDEP.
This is Faith's story...
Read Faith's Story
“We have no idea how long we have Faith for, so we have to put that to the back of our minds and make every day count. We live life as full as we can for her, and for us.”
Nancy, Faith's mum
Nancy was delighted to find out that she was pregnant, after being told that she may have difficulties conceiving at a relatively late age. She had a straightforward pregnancy and birth, and baby Faith met all of her developmental milestones. However, everything in their world turned upside down when Faith had a seizure at the age of five months, the day after her routine immunisations. The family went to A&E where Faith was diagnosed as having had a convulsion as a result of a fever brought on by the immunisations. They then went home and got on with life.
However, just a few weeks later, when Faith was seven months old, she had a second seizure while she was in the bath. It was prolonged, lasting nearly an hour, and she had to be given life-saving treatment by the resuscitation team in A&E. It started the cycle of seizures happening every few weeks and was a frightening time for the family.
After months of tests, when Faith was 15 months old, Nancy and Martin were told that she had the rare form of epilepsy, Dravet syndrome, which has a wide range of traits such as autism, ataxia, learning difficulties, speech delay and mobility problems.
Nancy told us:
“Faith’s health became a kind of time bomb - we were poised to react at any time of day or night, to intervene and administer rescue medication. Her seizures can happen at any time - if she is ill or if the temperature changes. If she gets too excited, we have to calm her down. It’s 24 hours a day.
"I used to be on call for the fire service, but now it’s like being permanently on call."
"We had to get our heads around the fact that the future looked very uncertain for our precious baby. This affected every plan that we had for our family such as work, holidays, excursions and normal every day plans such as shopping and day trips.
“I sleep in with her and that was the main reason for asking for respite, because I don’t sleep properly.
"She had a seizure at 5 o’clock one morning and she was face down on the mattress. If I hadn’t been there, who knows what would have happened."
"We don’t get any breaks at all and that is the problem. But you have to do what you have to do.
“Faith loves coming to Naomi House and doing all the different activities; painting, stories, music, and she loves it when they take her around on the bikes. She is mobile but she also has a wheelchair as she is very wobbly and can’t walk very far because of the ataxia. In her own little way, she is very sociable and very affectionate. She has learning difficulties and her speech is delayed, but she does say a few words.”
Initially the family, or just Nancy, accompanied Faith to Naomi House, staying in the family accommodation.
“It was great as I could be with Faith but still have a rest. The first time I went, I had the longest sleep since having her – 12 hours, I couldn’t believe it! I thought I would be worried about her and wouldn’t be able to sleep, but I slept right through. I woke up in a panic and dressed and went downstairs to see where she was and she was sat quite happily eating her toast! The carer said, ‘Nancy, what are you worried about?’
“Leaving your child is a big thing for parents, but I think partly due to exhaustion and partly because I had seen how the Naomi House nurses and carers were with Faith and the other children, I could feel confident that with their expertise, she would be looked after properly.”
Faith now has a little sister, Rose, and they have all stayed at Naomi House as a family. It has given Nancy and Martin the chance to do some activities just with Rose, which they hadn’t been able to do before.
“When Faith is staying at Naomi House, we can go out for a lovely day and know that Faith is happy, and having fun. That makes us feel less guilty about leaving her. We are able to phone in and check that she is ok and even speak to her. Last time we did this, she knew it was me and she blew kisses down the phone so I knew she was happy.
“The girls get on so well and Faith loves her sister to bits. At the age of three, Rose has got a very good awareness and is very wise for her age. It’s lovely to see and she is so caring towards Faith. She helps her and when she has a seizure, she will go over and stroke her head. Rose loves staying at Naomi House and sees it as a holiday. She loves the sensory room and doing craft activities, and the team make her very welcome. Martin and I make sure we take Rose out and do things we might not have been able to do with Faith, which is important, and where Naomi House really helps.
“Faith loves the kitchen, and the staff and volunteers are amazing with her. She loves going to stand at the counter and watch them. Whenever we go to Naomi House they will put flour on the counter for her, so she can do a bit of messy play and help with pastry making.
"Every minute of every day, the team are there for the children. They all communicate with her so well and you can tell that she feels they are her family away from home."
“She is always on the go. She won’t sit down and do painting or crafts for hours, or watch a film, so we have to find things to do with her. When it comes to night time at home you don’t get a chance to recharge your batteries because she might have a seizure.
"We know we have to maintain our physical and emotional strength, if I go down we all go down. That’s why we need a break, so that we can get refreshed and carry on to give her the best help that she needs. As parents we have to be on top form."
“You make the best of each situation. It is very hard work, but I wouldn’t have it any other way. She is worth everything. She has got a lovely personality. She is loving and she makes my job as a mum easy, apart from the medical side of things – that’s not easy at all. If she has a seizure and is drugged up, she comes round and looks at me and says ‘kisses’. That’s all you need, that’s why we do it, to get that look, or a cuddle, or a little head butt, that’s her way of giving you a kiss. That’s all you need to get you from one phase to the next hard phase and you get through that.
"Faith gets through it, she carries on, she’s the one in pain so if she can do it then we can carry on. It’s hard, but we do it for Faith; we would do anything for her and want to give her as good a life as we can."
“Naomi House has allowed us to put a bit of normality back into our lives. Since having their support, we can plan trips and generally recharge our batteries, which is vital for Rose, as her life is so affected and restricted by Faith’s condition. I can also spend time with my husband and not feel like a carer or nurse for a short time. The staff at Naomi House are there to support us as well as Faith - there was a time on one of Faith’s first visits when she had her first seizure there and I left her to sleep in the care of the nurses. They were there to reassure me and understood what a wrench it was leaving her - albeit in their care, which was second to none.