Hannah is 15 years old and lives at home in Basildon with her mum, Michelle, dad Simon and their pets – cats River and Autumn and a Springer Spaniel called Ash. Hannah has an older brother Joseph and an older sister called Holly who also had Congenital Myotonic Dystrophy and died at 11 weeks. 

“We wanted more children, so when I was pregnant with Hannah, we had the tests to see if she’d inherited the condition. When we got the results back at 22 weeks, I’d already felt her move, so knowing she did have Congenital Myotonic Dystrophy, we decided to continue with the pregnancy.   

Hannah was born at 34 weeks and was on ventilation to help her breathe for 52 days. Hannah stayed in the hospital till just before her first birthday.  

Little Havens was mentioned to the family through a social worker. They’d also met other parents in the hospital who were already using the hospice.  

“Little Havens gives us a little bit of respite. Hannah has complex needs, including behavioural and developmental needs, and requires a lot of medications and support with her personal care. Everyone thought it was a place to die, but we could see differently.  

“Little Havens was the first place Hannah went swimming. I nipped to Sainsburys to get her a little costume – we were so excited that she’d be able to experience that.  

During her time in the hospital following her birth, Hannah also developed jaundice which turned out to be liver disease and was placed on the list for a transplant. At times, she became so ill, Michelle and Simon were told Hannah would die. At age 4, the family was staying in Birmingham and was due to go to a local hospice for end-of-life care before receiving the call that a match had been found from a 14-year-old girl.   

Hannah’s condition is stable at the moment, although her speech is becoming more slurred. The family know this particular condition can stabilise over the teenage years and then progress rapidly. But Little Havens will always be on hand to support them all. Michelle says, “Little Havens actually is part of our lives, given how much you have helped us as a family and individually. I will forever be grateful for everything you have done and continue to do.” 

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Published in 2024