Mum Niki talks about how Demelza helped her have a good night’s sleep and how her family are still being supported
During my pregnancy doctors found evidence of fluid on the brain of the baby and they didn’t know what effect that would have. Despite this Megan was born with no problems and appeared to be a healthy child. But when she was 18 months old she started having febrile convulsions. Each seizure was very prolonged and she was having around one a month. On each occasion she had to be hospitalised.
At the age of three she was diagnosed as a status epileptic with respiratory arrest. This meant that every time she went into a fit the only way to stop it would be with drugs and she would stop breathing and have to be ventilated. On one occasion she fitted for three days.
No-one could find a reason for the fits despite numerous scans and tests.
Megan was put on different medications and drugs but nothing ever worked for longer than about six months. A lot of the medication caused behavioural issues and speech problems. She might cut my hands, hit me, or self harm. She didn’t understand what she was doing, but it was challenging.
We had to have oxygen with us and we were in and out of hospital. In Megan’s lifetime we were admitted to intensive care probably about 50 times. One year we spent about a month in hospital.
Despite her fits Megan was an active child, she swam for a disabled swimming club, competed in disabled gymnastics from the age of five, did horse riding, dance and singing.
When she was about five or six I realised we could not cope. I spoke to a social worker and she made a referral to Demelza.
It was an absolute godsend as I had never had a full night’s sleep since Megan’s seizures started. We put an extra bed in our room which continued until she was around nine. We were so frightened we would miss a fit as without oxygen and immediate medical assistance, she would die. We never did but there was no warning.
We started going to Demelza’s hospice in Sittingbourne for weekends, me, my husband, Meg and Sian, our older daughter.
We could have proper sleep, they pampered us, overfed us. It gave us an outlet. And we had some really great trips with Demelza. We also met other parents and realised that we were not alone.
When Demelza opened in Eltham Megan was refusing to stay overnight anywhere without me but Demelza organised for her to have day care.
They also helped get funding for a seizure monitor under her mattress.
Then Meg started a new drug and she went nearly two years without a seizure. As her condition had improved she was discharged from the hospice but Demelza knew how much we needed them and continued to include Meg in the teenage group activities.
We were able to take her to Menorca – the first time we had taken her on a plane. She spent all her time in the water people watching.
Sadly this was not to last and when the fits started again they were really close together, severe and aggressive and very scary to cope with. She also started having hallucinations after the fits. It was very traumatic.
In between fits she was like a normal teenager. She had a boyfriend and she loved music, especially Justin Bieber.
But we knew we were on borrowed time and that one day she would be taken. Demelza helped us enormously to try to accept this.
Meg died very suddenly in the end, of a heart attack, 15 days off her 16th birthday. She was strong and fit with no signs of anything different. The seizure was completely out of the blue. Megan was ventilated but her pulse was so low that her heart stopped. Doctors carried out CPR for over half an hour to try and restart her heart.
This all happened round 2am and by 6am Demelza arranged funeral directors to take Meg to the hospice. We stayed for seven days completely smothered with care and understanding. Staff were there to talk us through the worst days of our lives. They made phone calls, dealt with about 200 visitors, brought us tea, sandwiches, crisps, cakes, they never grumbled. They organised everything, it was astounding.
We have all had counselling and they have helped the whole family try to come to terms with our loss.
There was something so special about Meg. She was an absolute pleasure to have and a joy to be around, although at times life could be very hard on her.
I sleep now like I’ve never slept before. It’s an easier life but it’s an empty life and we all feel like the main character and sparkle in our house has gone. Demelza came to our rescue when we needed someone to put perspective back into our lives, I do not know how we would have got through it without them.