Rebekah Hughes is 11 and has been receiving care and support from EACH since 2011. Her parents Annabel and Haydn and Rebekah’s twin brother Henry also receive support from EACH.
As a baby, Rebekah appeared well and her development was on a par with twin brother Henry until she was 11 months old, when she started having severe and prolonged seizures. She was diagnosed with Dravet Syndrome a very severe form of epilepsy in December 2006 shortly before her 2nd birthday. Since that time, Rebekah has suffered from hundreds of seizures, including being airlifted to hospital and spending time in intensive care. Rebekah has been on life support on many occasions and the family are on high alert at all times.
Annabel, Rebekah’s mum said: "It really is devastating when you find out your child has a such a severe illness. We Googled it when we received the letter of diagnosis, and it described Dravet Syndrome as a 'catastrophic epilepsy' with high risk of sudden death. Little is known about survival into adulthood. We always have emergency medication and airways with us, and have to ensure we’re within easy access of a hospital."
Over the last few years, Rebekah has also developed problems with her mobility, eating (she is now tube fed), her speech and sleep (Rebekah wakes regularly in the night) – in short, it affects every aspect of her life.
Rebekah needs to be monitored at all times and the family use video monitors and a saturation monitor to alert them to seizures – Annabel sleeps with Rebekah every night.
The family started accessing home care from EACH five years ago, something described as invaluable by Annabel: "Initially, I was worried Rebekah would feel we were abandoning her with someone else, especially as she is so vulnerable. The reality was so different though – the transition leading up to us leaving her with an EACH nurse gave us huge confidence. We had the same nurse every time and Rebekah took every bit of guilt away – she couldn't wait for us to go out so she could spend some time with her new friend! Very early on, she even told Henry and I to go out as soon as the EACH nurse arrived. So we did, knowing that Rebekah was 100% happy!"
Rebekah really looks forward to EACH staff coming to look after her and it allows Annabel and her husband Haydn to spend some quality time with Henry.
"Rebekah feels more grown up and independent spending a bit of time apart from me. Although Henry is not resentful that I spend so much time with Rebekah or that our lives are planned around her needs, being able to balance that by spending time with Henry, while Rebekah receives a care session, has really helped."
Henry receives support and attends specially organised sibling fun days. EACH has supported him throughout, including when Rebekah moved to a specialist school, which was the first time they weren’t at the same school together.
The family haven’t yet used overnight care at the hospice, given the distance from home and the need for close proximity to hospitals, so the EACH service comes to them. Special after-school homecare for Rebekah also enables Annabel to take Henry to a club or have a friend to play. Care during the school holidays is extremely important to the family.
Annabel continues: "EACH’s support gives us guilt-free time to go out and spend time together as a couple, and to enjoy quality time with Henry. It means I also have a small amount of time to myself – to go to the gym and not be the carer, just for a couple of hours.
"I don’t know what we’d do without them. It would be far more stressful and tiring without their support. There would be a lot more pressure on us all, which would affect the whole family."
Annabel describes our Christmas parties as magical, seeing all the children and siblings being themselves and having a wonderful time. She said: "We can’t really take Rebekah to parties as it can trigger a seizure. EACH parties are very different though, there are so many highly specialist staff there it’s one party we can take her to.
"EACH has given our whole family the support we need. As Rebekah has grown her needs are changing, and we’ve faced many new challenges. The experienced staff at EACH have supported us in so many ways – they are the experts and deserve everyone’s support."