When Lorea was a baby she hardly ate, was always crying and slept all the time. Already having a healthy two-year-old girl, Amaia, parents Maite and Adrian just felt something wasn’t right.
“One day her eyes started rolling backwards so we took her to our GP and she was referred immediately to the Royal Surrey,” said Mum, Maite. At 9 months old Lorea was diagnosed with a very complex form of epilepsy. “It was a massive shock, I remember it like yesterday. I remember asking, ‘Is she going to be disabled? What does this mean?’”
Following an overnight stay and a barrage of tests the family were sent home with an uncertain future. “It was like a nightmare, I kept thinking ‘Is this real? Is it really happening to us? What will it mean for Lorea?’”
Lorea’s life-limiting condition means she experiences a number of different types of seizures and getting control of them with medication is very difficult. She also experiences learning, behavioural and emotional difficulties and needs round the clock care. “It has been a very bumpy ride, a real rollercoaster, every day is different with her. When she was younger we had it tough. It was hard on her sister Amaia, having a sibling that’s crying and screaming and biting me,” explains Maite.
“When we were first told about it we just couldn’t believe it, you’re still trying to come to terms with the fact that this tiny 9-month-old baby that still smiles and makes noises has this condition, and it takes years to come to terms that the life for this little girl isn’t what you thought it was going to be, you have to say goodbye to that and that is hard.”
The family first heard about Shooting Star Children’s Hospices through a doctor who had used the service personally. “When we were initially shown round, at first we thought ‘No we don’t want to bother people, we can manage,’ but after a while we realised actually it would be good for us. The support they give you at Christopher’s is amazing. It’s like being in a nice bubble; you can leave your child in their care and have no worries whatsoever. It’s clear the team love their job, they love the children and you can see that.”
Lorea loves to spend time in the sensory room and hydrotherapy pool. “Lorea’s 12 now and tall so our Hospice at Home carer helps to lift her and move her around; he always takes her to the pool which she really loves. She’s just very happy here. She grabs me to go to the sensory room. She’s very wobbly walking, but always heads there – she absolutely loves it.”
Amaia, Lorea’s older sister, also enjoyed the special sibling’s days when she was younger. “It was great; we did all sorts of things. Trips to Legoland and everything,” says Amaia. “Some professional musicians came once and were teaching the kids to play part of the song with different instruments and then perform it to all the parents,” explains Maite. “I was the guitar! It was really fun!” says Amaia.
Christopher’s has also helped the family whilst some essential adaptations take place at home to make it a safer environment for Lorea. “Due to her seizures she can fall very quickly and once she’s fitting it doesn’t matter whether she’s against a table or corner, she can get hurt really easily,” explains Maite. “We were in a situation where we weren’t sure what to do as we had to have the work done but the building work was getting really disruptive. Our key worker told us to speak to Christopher’s about the possibility of staying there whilst the works were completed. They worked it all out for us so we could stay at the hospice and self-care for Lorea. Although I’m self-caring, the nurses and care team are always there to help and go the extra mile. It really is the best place we could be.”
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