Seven-year-old Lucy has seizures every day, the family have tried every medication, but nothing can really control them. Her mum Emily explains “Because of this, her development has regressed, and any skills she had learnt are lost because of the damage the seizures have on her brain. Her breathing is affected, too, and can catch infections really easily.” 

Lucy’s epilepsy is uncontrolled because of a genetic condition called mTor. 

“The tests were relentless to find out what was happening; we were in hospital for weeks. All they could say was that Lucy had epilepsy and she could lead a normal life. But quite soon after, she started to decline.” 

Lucy and her family were referred to Little Havens by her paediatrician and epilepsy nurse at Broomfield Hospital.  

“We visit Little Havens for the day and come for play sessions too. Often, it’s the only place I can take Lucy and her sister Tilly together. We can’t go to a traditional playgroup or park because it’s just not suitable – more risk of infection, lack of accessibility or too noisy.   

“Lucy and Tilly have such a loving relationship, and at Little Havens, they can experience things together. They both get spoilt rotten at Little Havens. I do, too – I can eat my lunch without interruptions because there is always someone to help.  

 If Lucy needs to go to the hospital, our family unit has to be broken up but at Little Havens, we can be together.  

“I feel lucky that Little Havens is in our life. Whilst Lucy is not in the most fortunate position, we’re lucky to have somewhere like this to be there when we need them.” 

To find out more about how you or someone you know would benefit from the care at Little Havens, click here. 

If you would like to donate to Little Havens please click here. 

Published in 2024