At just five days old, Alyssa had a seizure, which affected her neurological development and resulted in severe developmental delays. Three years ago, the family discovered it was due to a very unusual gene change, where one of her genes didn’t form properly, causing a rare form of epilepsy. 

Alyssa and her family have been supported by Little Havens for 10 years, after being referred by her epilepsy nurse when her younger brother Ethan was born. 

Lynette said, “We thought it would be like a hospital, but after looking around for the first time, we realised it’s not like that at all. We were staying upstairs, and it was like being in a hotel. I remember thinking, ‘Wow, this is amazing – it’s just what we need.’” 

Alyssa can’t dress or feed herself and relies on her family for all her care. As she’s getting older and heavier, it is getting harder to move and lift her.  

“Little Havens care for Alyssa so that we can have a little bit of a rest. You don’t have to worry when you come here – it’s a bit of a break from being a carer. It’s like a home from home. 

“When Alyssa comes to Little Havens for respite, sometimes we stay as well. Other times when she stays here, we do something with Ethan. One time, my mum and dad stayed here with them while we went on our honeymoon. 

“We find it quite hard to go out to places because not everywhere is suitable for wheelchairs, which is another reason why we like coming here. 

The family like to live life day to day. In the future, the family will continue to manage her epilepsy, but as Alyssa gets older, it is uncertain how she will be affected. 

“Little Havens has helped us to make every day count and create memories through their activity days and spending time in the gardens. 

“She just loves being taken around the garden – it’s beautiful. She also loves the swimming pool, the sensory room and being pushed around in her chair. She loves getting attention.”

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Published in 2024