Abbie’s story: “It’s so nice knowing she’s safe and happy. It means I can relax.”

For mum Lisa, East Anglia’s Children’s Hospices (EACH) has been an “absolute saviour” for her whole family.

When her daughter Abbie was born, mum Lisa didn’t know that in just six months’ time, they would find themselves in intensive care after Abbie had a seizure. It was then that everything changed.

“We weren’t aware of any problems when she was born but ended up in hospital when she was six months old, after her first seizure. It was such a scary, torturous time. She spent more than a fortnight in intensive care and we were told she’d never come off her life-support machine.”

Defying the odds

“Thankfully, she defied the odds but it wasn’t until she was five that we were given a proper diagnosis.”

That diagnosis was a rare gene mutation, which brings its own health complications including epilepsy and hypertonia, a condition in which there is too much muscle tone and makes arms and legs stiff and hard to move. Abbie, now 12, is also prone to chest infections and is fed via a tube.

Lisa and partner Adam, have two other children – Jake, 16, and Tyler, eight. Jake has autism while Tyler has learning difficulties and ADHD. When Abbie was one, the family was referred to EACH for the first time.

Respite and relaxation for the whole family

“It’s been an absolute saviour, for us as a family and me as a mum. Having three children with special needs is hard work and incredibly intense. There are times when I feel beyond tired. In fact, I’m completely exhausted.

“When Abbie has respite care, it gives me a chance to take a break, recharge my batteries and catch my breath. I feel I’ve got more energy when she comes home again and that’s such an invaluable feeling.

“Abbie loves her time at Milton. She enjoys doing arts and crafts, messy play and especially spending time in the sensory room. For me, it’s so nice knowing she’s safe and happy. It means I can relax.”

Lifeline medical care

Abbie has lots of seizures but has been boosted since starting on a ketogenic diet – a dietary therapy used mainly to treat hard-to-control epilepsy in children. It forces the body to burn fats rather than carbohydrates.

“Starting Abbie on the diet meant we were also able to wean her off her epilepsy drugs – all of which made her very sleepy and didn’t really stop the seizures. It’s certainly helped because although she still has occasional seizures, she’s much more alert and appears happier. She certainly laughs more.”

“I’m very proud of her and she melts my heart.”

“Abbie’s such a lovely girl. She’s great fun and very special to be around. She’s non-verbal but has her own way of communicating, including lots of sounds, and her personality shines through.

“She’s very aware of everything going on around her and makes lots of great facial expressions, especially when she’s happy and excited about something.

“I’m very proud of her and she melts my heart.”

EACH is one of 54 children’s hospices across the UK. They are a lifeline for families like Lisa’s, who care for children with a life-limiting condition. This Children’s Hospice Week, you can support incredible hospices like EACH, by donating today.