Aimee’s story

Aimee and her Mum, Marie15 years ago, Marie and 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 4 months old. 5 weeks later came another seizure, and another and another. At 9 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 so cuddly, loves school and playing with her car and train toys.” 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 and has a strict medicine routine to control her condition.2020_10_20_FamilyStory_CTHpat0391_sibling_mum

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 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 House. 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 2 hours and focus on anything other than Aimee. But with Kirstie, 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.”

Due to Aimee’s complex medical needs, the family were shielding at home for months when the COVID-19 pandemic struck. “It was really hard for us. We have been working from home, trying to manage Aimee and her medical needs, it’s been really intense. But we have had regular phone contact from Chestnut Tree House and they really have been a lifeline for us. We know that there is always someone at the end of the phone if we need them.”

Aimee and her Mum, MarieAs well as regular phone calls, the family received some activity packs from Chestnut Tree House to help them keep Aimee occupied whilst shielding at home. “The activity packs were lovely. There were all sorts in there, stickers, colouring books, even a Thomas the Tank Engine train toy for Aimee! Lots of lovely arts and crafts and sensory things.”

When the family came out of shielding, they began having visits from their Community Nurse, Kirstie, again, “recently, Kirstie has been taking Aimee out and about for the day when she visits. This is because my husband and I have been working from home, so it gives us a little bit of time to get our heads down and work.”

“Recently, we’ve been into Chestnut Tree House for an annexe day. It was fabulous. Just to get Aimee out, somewhere safe, and for us to have support if we wanted it.”

“It really is fantastic knowing that we have the support from Chestnut Tree House. 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.”

“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.”