Beautiful Eddie never got to lead the long and happy life that his family had dreamed of. After a courageous ten-month battle, their worst nightmare came true. But thanks to Bluebell Wood Children’s Hospice, they said goodbye with dignity and made memories that will always stay with them. Mum Tiffany shares their heartbreaking story:

“All our initial scans were fine and it wasn’t until I was around 28 weeks pregnant I began to feel a difference with Eddie's movements,” she said.

A series of scans didn’t reveal anything of concern, but despite this Tiffany had a niggling feeling that something wasn’t quite right.

Eddie arrived five days early, much to the delight of mum and dad and his four big brothers and sisters. 

“We were allowed to go home the very next day and we were so happy after what had been a nervous few months.”

Sadly, the family’s joy was short-lived, when Eddie started to struggle with feeding and breathing.

Following an operation on his trachea, tests revealed devastating news.

Eddie was diagnosed with Neurofibromatosis, a condition that causes tumours to grow in the nervous system. This had caused a bleed on his brain, tumours on many of his internal organs and a variety of other complications.

“We were utterly heartbroken. We wanted this baby more than anything and we were so happy. Deep down we knew something was wrong – but we never imagined it would be as bad as it was.”

After Eddie had a series of seizures in October 2019, Tiffany and dad Liam received the devastating news they’d feared the most; that Eddie was unlikely to live to celebrate his first birthday. 

“It felt like everything had stopped. Questions were racing through my head. What are we going to do? How on earth am I going to tell the children?

“Every day I just felt so upset – but I knew I had to try and keep it together for him.”

Brave Eddie battled on, even making it home for his first and only family Christmas after a chest infection saw him spend most of December in hospital.

The following May, at the height of the first lockdown, Eddie’s condition became critical and he was rushed to hospital.

“Because of Covid only one of us could be there with him. It was so tough. We had to Facetime his dad and his brothers and sisters.

“It all seemed to happen so quickly. All that was going through my head was ‘please Eddie, please be alright’.”

“But I knew we were losing him. So I asked one of the nurses if his dad could come, and they said yes. 

“When they put him in my arms I couldn’t stop crying; but I made myself stop and told him we loved him so much and it was time to go. Time for the pain to go.

“Then they told me he had gone. I just screamed.”

Tragically, Eddie passed away ten minutes before dad Liam arrived to say goodbye to his little boy.  

Later that day, Eddie and his family were reunited at Bluebell Wood Children’s Hospice, where they spent four precious days making memories together.

“For us to see him wrapped up in blankets in a beautiful little room just for him, not in hospital hooked up to machines, was just so lovely and sweet.

“We just thought – thank god we can be with him again.

“We took lots of pictures, made hand and feet moulds, and made a pebble to put in the Memory Garden.

“The amazing staff even helped us to organise the funeral. Nothing was too much trouble. They were just so lovely, and have been there for us ever since.

“It was so important to have that time as a family at the end. It was the best thing that could have happened to us under the circumstances.

“As we left the hospice all the staff lined the drive. It was so beautiful and so respectful.

“We’d like to thank everyone at Bluebell Wood from the bottom of our hearts for making the worst possible situation so much more bearable.”

Help us be there for families like Eddie's