Ezra’s story

Meet Ezra – a little boy with one of the biggest smiles. His mum Emily says Ezra ‘makes her laugh every day’. But behind that beaming smile and magnetic personality is a little boy with a very serious condition.

Ezra has a life threatening genetic disorder called congenital hyperinsulinism. This means his body produces dangerously high levels of insulin. As a result, he requires regular tube feeds, constant monitoring and medication to help stabilise his blood sugar levels.

Emily explains: “Ezra was born at full term. My eldest son Stanley wasn’t, so I was excited that I’d managed to have a full-term pregnancy. But then shortly after he was born, when we got him home, he wasn’t waking in the night to feed and when we went to pick him up, he was floppy.

A young boy named Ezra showing off his stuffed toy while at Acorns

“We rushed into A&E and they did a blood sugar test – it was really, really low and from then on, it was hospital stays and taking it step by step, and day by day.

“It was the easiest way to come to terms with everything, especially in those early days. You don’t know what your future is going to be with children like Ezra and you worry for them.”

Anyone who knows Ezra will have noticed that he’s always wearing a rucksack – this contains his medications, his feeds and his glucose monitor, which beeps when his blood sugar levels drop too low.

“We listen for the alarms and look out for any symptoms; if he’s bit wobbly on his feet or just showing strange behaviours and treat the low blood sugar. We always have to be vigilant and keep an eye out for him. If he doesn’t always respond, which has happened multiple times in his life, we have to call for an ambulance. It can happen really quicky, there’ll be no warning and he’ll lose consciousness.”

Ezra’s needs round-the-clock monitoring and as mum to this ‘very, very active’ little boy Emily admits it can be ‘full on’. Emily and her family have found a lifeline in Acorns Children’s Hospice, benefiting from various services at our hospice in Worcester, Acorns for the Three Counties, including respite stays.

“They indulge Ezra’s every whim at Acorns. They play with him and give him all their attention and all of that focus. He has the time of his life. He really looks forward to his Acorns visits.”

A young boy named Ezra enjoying hydrotherapy at Acorns Childrens hospice with a nurse

“And for me, it gives me a break. I get a full night’s sleep with no alarms and no thinking about medicines and it gives me quality time with Stanley.”

Acorns has now become part of the family and Emily couldn’t imagine her life with this vital care and support.  

“Without Acorns life would be bleak because it is so relentless. Acorns has supported me through so many things, even the long hospital stays when we’ve been miles from Acorns.  

“I don’t know what I would do without Acorns. It gives us time to recharge and I know Ezra is safe and having the best time and it’s meant such a great deal to us.”