Alex is 17 years old, and at just 13 months old she was diagnosed with a genetic chromosome condition called Angelman syndrome.  

Alex’s condition means she has delays in her physical and mental development, but the biggest challenge is her epilepsy. Five years ago, she could walk about a bit; even up to 19 months ago, she could take steps holding someone’s hand. But with every bad bout of epilepsy, she loses a few more skills and doesn’t get them back.  

Mum Megan explains, “Everything was fine during pregnancy, but I just knew something wasn’t right as the months went on following her birth. The tests started; we were in and out of hospitals and clinics. I remember the day she was diagnosed. It was 29th October 2007. We knew the name of the condition, but that was it.” 

When Alex was younger, they were told she wouldn’t need hospice care. However, her condition rapidly declined over a few years, and at this point Megan asked the consultants if Alex’s life would be limited. They said yes so, she reached out to Little Havens to ask for support. Since 2021, Little Havens has been a safe haven for Alex, Megan and her brother Oscar. 

“Coming to Little Havens is the only time I can fully breathe and relax. I genuinely don’t know where we would have turned without Little Havens when we’d reached that crisis point in 2021.  

“Alex needs up to nine medications a day, plus feeding via her tube so she gets the nutrients she needs. She’s completely dependent on me, which is tiring. Last summer, we barely left the house apart to visit Little Havens for Sensory Storytimes and picnics 

“Other places that used to offer respite can no longer do so because of her changing medical needs, but that doesn’t faze Little Havens.  

“Being at Little Havens also means I get time to spend with Oscar, just him and me. We can go swimming knowing that I can leave my phone in the locker for an hour. When we stay at Little Havens, Oscar can come too, so it’s like a mini holiday experience that he otherwise misses out on.  

“During Alex’s life, I’ve had to shout and fight for support. It’s exhausting. Having Little Havens – a place that is safe and kind, means everything. It’s the opportunity to feel a little bit normal.” 

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Published in 2024