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Read the story of Aimee, daughter of Marie and Martin Baker, who suffers from Dravet Syndrome, a rare form of epilepsy that affects every area of here life.
Nine years ago Marie Baker and her husband Martin welcomed their beautiful new baby girl, Aimee, to their family. After an easy pregnancy and normal birth they were over the moon to bring their perfect, healthy little girl back to their family home in Eastbourne. And for four months they were feeling pretty pleased with themselves; even having two children under the age of two didn’t seem as hard as they had imagined.
Their world was turned upside down, however, when Aimee had a seizure at just four months old. Five weeks later came another seizure, and another and another. At nine months old Aimee was diagnosed with Dravet Syndrome, a rare form of epilepsy that affects every area of her life.
A happy little girl, Aimee “lives in her own little bubble” according to mum Marie. “She is a happy child who adores her sister and loves school.” But her condition means that Aimee suffers seizures on a weekly basis, often having 6-8 fits in the space of a few hours. Aimee is mobile, but unsteady on her feet, she can communicate but is unable to speak and has a severe learning disability. She is also tube-fed, in nappies and has a strict medicine routine to control her condition.
For the first four years Aimee would have a seizure every 7-10 days. It would last up to an hour and result in her being hospitalised for 4-5 days at a time, putting a massive strain on family life. To start with they had limited help: district nurses would visit occasionally to help out and the wider family, too nervous to look after a child with such complex needs, would often look after Katie whilst Marie and Martin focussed on Aimee, but they had no respite from the demands of caring for a child with such an unpredictable condition.
It was during this time that they were referred to Chestnut Tree. They started receiving visits from one of the Community Nurses who takes care of all of Aimee’s needs, meaning that the rest of the family can enjoy activities that are usually out of bounds for them. Mum Marie explains, “ I would never usually go to the cinema because I would be terrified to turn my phone off for two hours and focus on anything other than Aimee. But with Laura, our Community Nurse, I can do just that. She knows Aimee and us so well, I know she will look after her with the same care and attention that I would.”
And the help goes beyond respite. Marie continues “recently we needed a car seat for Aimee when it became clear that she wasn’t safe sitting on a normal booster seat but the one we needed cost £1,700, an amount I’m sure most people would struggle to find. Laura stepped in and helped us complete a charity application for funding, which was successful and means that Aimee can now travel with the family in safety.”
As well as providing care for children with life-shortening conditions, Chestnut Tree provides support for the whole family. “When Aimee’s sister, Katie, went through some issues with sleep she had several sessions with Chestnut Tree’s play therapist which really helped her a lot,” says Marie. “Also, the Community Team will also often ring us up out of the blue with opportunities for fun activities that we can all take part in. For example, last year she invited Katie to attend the British Airways Christmas Party at Gatwick Airport for the siblings of the children cared for by Chestnut Tree. She had a great time visiting Santa on board a plane and meeting CBBC’s Dick and Dom.”
“And, of course, we love spending time at the House too. We treat it like a little holiday; knowing that Aimee’s medical needs are taken care of means we can spend some quality family time together.
“It really is fantastic knowing that we have the support of Chestnut Tree. We have been given the opportunity to build a really strong relationship with our community nurse, something that doesn’t often happen with other care providers, which alleviates any worries we have about leaving Aimee for a few hours.”
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