Dravet Syndrome Stories From Those Who Know

Katie and Aimee Baker: Being a Big Sister

By Marie Baker - Mum to 2 remarkable little girls

Aimee is our youngest daughter. She was born is September 2005 and was eagerly awaited by her big sister, Katie, who is 2 years her senior.

Aimee was a very easy baby and Katie thought she was "fab" from day one. Then when Aimee was just under 4 months of age she had her first seizure - turning all our lives totally upside down, especially Katie's. I would like to take this opportunity to write about how Dravet syndrome has affected Katie and the stages she has gone through in her short life.

Initially the seizures scared Katie, as they did all of us. She did not understand what was happening or why it was happening. The sirens on the ambulance frightened her and she went from being the shy 2 year old that had rarely been left without Mum or Dad, to a little girl who would wake up in the morning not knowing whether Aimee would be at home or not or who would be looking after her. There would be times when Aimee would be hospitalised 50 miles away from home and Katie would have to stay with relatives for all that time with just a brief phone call from us each day. It was hard and although Katie seemingly dealt with it really well our return from hospital would be marked by very obvious attention seeking behaviour.

Then came the times when Katie would inform us that Aimee was having a seizure, she was very proud of herself whenever this happened. She then started "ambulance watch" and as she seemed to want to become involved we tried hard to involve her in these emergency situations. Katie often sits next to a "Wobbly Aimee" stroking her arm and telling her that it will all be ok.

We then went through a stage where it was fun when Aimee "wobbled". The paramedics were always lovely to her, she got spoilt rotten at the hospital and would often get to go and have a sleepover with her cousin. She is still going through this stage at the moment but is starting to find it all a bit boring (she is 5 now so bored seems to be every other word coming from her).

Katie does seem to feel a bit left out at times, for example she thinks Aimee's therapies are fun and wants to do them too. We try to involve her in as much as possible and she responds well to this. Aimee receives care from our local Children's Hospice and they treat both girls like princesses. There are parties, days out and at the actual Hospice itself more fun than any child could ever imagine. Katie thinks going to stay at the Hospice is our family holiday and that makes us very happy.

All in all having a sibling with such complex health and care needs is hard. There are times when it simply isn't fair. Things have to be cancelled; we sometimes do have to miss out. But Katie loves Aimee and Aimee loves Katie. Katie is protective, loving and has never once compared her sister to her friends siblings. Aimee is Aimee and that's good enough for Katie.

We are supremely proud of both our little girls and just know that Katie will grow up being a loving, compassionate, empathic young lady - what more could any parent ask for?

4th September 2008. Submitted by Marie Baker.