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Louiza was born a healthy baby, but at four months old her Mum, Amanda, started to notice that something was wrong. After several visits to the doctors, Amanda was told that her baby girl was fine and was just teething. “I have two older sons so I knew that there was something more than that,” says Amanda.
A day after her first birthday, Louiza had an epileptic fit and was rushed to hospital. Soon after that, the family found out that Louiza had a difficult strain of epilepsy and part of her brain was significantly underdeveloped, resulting in severe complex needs. “We don’t have a diagnosis for Louiza, who is now 16, she’s a mystery – that’s what the doctors say. Her complex needs mean that she can’t speak, can’t communicate, and isn’t mobile. She requires 24-hour care and needs someone constantly watching her.”
“The first 11 years were really difficult,” says Amanda. “We had very little support and the only break I would get was when Louiza was at school. Louiza was getting bigger, and I was drained. A friend then told me about Chestnut Tree House, and I was so pleased to know that there was help out there.”
A few weeks later, the family visited Chestnut Tree House for the first time. “The moment we walked in, we noticed how lovely and bright the house was. The staff were so friendly, and that really stood out for me. Often people ignore Louiza because she’s in a wheelchair, but the Chestnut Tree House team spoke to her, made sure she was involved, and gave her so much attention.”
The family has been cared for by Chestnut Tree House for over five years now. “Louiza loves visiting Chestnut Tree House. Every time we drive up the country lane to get there she beams with excitement. I call it our little hidden gem.”
“It’s very limited where we can take Louiza for days out due to her complex needs. So, it’s amazing that she can go to Chestnut Tree House and do the things that she loves. The sensory room is her favourite place to be and she loves splashing around in the swimming pool. And for me, it’s great as I have the opportunity to spend some one-on-one time with my youngest, Tarik. That’s something that we wouldn’t be able to do without the support of Chestnut Tree House.”
14-year-old Tarik is Louiza’s youngest brother and has also benefitted from the support of Chestnut Tree House. “Growing up, Tarik thought we were the only family in this situation, but because of the sibling days that they have at the house, he’s met other siblings in a similar situation to him. Because of Chestnut Tree House, Tarik knows he’s not alone.”
Due to the pandemic, the family has been staying at home to protect Louiza, who is vulnerable to COVID-19. “It’s been a really difficult year. Louiza loves getting out and about and she doesn’t fully understand why she’s stuck inside. She just looks at the front door and I try to explain to her what’s going on, but I don’t think she fully understands.”
“We’ve missed visiting Chestnut Tree House immensely. But we’ve had regular phone calls from them and that’s made a big difference. They are so supportive and it’s so nice knowing that there’s always someone on the other end of the phone, happy to listen to you and just have a chat.”
When asked what life would be like without Chestnut Tree House, Amanda says, “It would be hard. It would be extremely difficult. I’d be drained. Chestnut Tree House is just amazing and life would be a lot harder without them.”Read more family stories