You are here: Home | News | Candis News | Everything revolves around Freya

Everything revolves around Freya

Barbara Smythe, 46, knows the heartache of balancing the 24-hour-care needs of a poorly child with looking after their healthy twin

My two youngest children, Freya and Elliott, both 15, may be twins but you'd never guess it. Freya suffers from two life-limiting conditions, Rett syndrome and Lennox syndrome, which causes multiple physical and learning disabilities. She needs 24-hour care, can't speak, is confined to a wheelchair and is fed via a tube. The life Freya leads is a massive contrast to Elliott's. A healthy, typical teenager, he's very active and enjoys playing football and going out with his friends.

Although the twins were born five weeks early on 10 August 1994, they both seemed perfectly healthy. It wasn't until they were three months old that Freya first had a seizure. We rushed her to Derby Royal Infirmary, where she was diagnosed with Lennox syndrome, one of the most severe forms of childhood epilepsy. It was a shock, but we were hopeful it could be managed with medication. However, Freya's development was very slow. Her seizures were also getting worse and endless doctor's appointments and changes in medication weren't working. At two and a half she started walking but, just after her fifth birthday, that stopped and she became immobile.

By the time Freya was ten, she was taking 125 tablets a week, suffering up to 20 seizures a night and spending around seven months a year in hospital.

In June 2005, Freya was taken to intensive care at Derby Hospital after slipping into an epileptic coma. There I met Jane, now 34, and her daughter, Sophie, 8, who suffers from tuberous sclerosis, a genetic disorder that causes tumours to form in many different organs. As we were both caring for a life-limited little girl, we understood each other's hopes and fears and formed a friendship that has lasted to this day. It was Jane who told me about Rainbows hospice for children and young people. She and Sophie had been going for years and she couldn't believe I'd not been told about what they could do for our family.

When we left hospital, I contacted Rainbows and was invited to visit a few days later. I couldn't believe how lovely it was - like a five-star hotel for children. We had our first break there together as a family in August 2005 and it was amazing. Jerome and I were able to have our first full night's sleep in 11 years. Yet, the staff did as much for Elliott as they did for Freya, keeping them both busy with art and craft activities and games, so that we could relax in the hospice lounge, knowing our children were not only being cared for, but happy too!
Last April, Freya was finally diagnosed with Rett syndrome, a rare brain disorder that causes profound physical and learning disabilities. It was a relief to finally understand why Freya was so ill and Rainbows were able to give us the information and advice we needed.

Five years on, we don't stay at the hospice as a family any more; Freya goes on her own. It means we can spend quality time with Elliott, take him out somewhere and catch up with him. Being able to visit a hospice like Rainbows is a lifeline. It's given us the confidence, support and freedom to feel like a proper family.