Evan’s Story

Evan had a short life but a precious one. This is his story told by his dad Aron …

“It’s time.”

On 19th September 2016, everything changed. 

My wife woke me early in the morning and told me, “It’s time.”

Usually, the announcement of your wife or partner going into labour would bring a huge wave of excitement. But for my family and me, this moment was much different.

At our 20-week scan, we learned of complications with the pregnancy. Four days later, we received the devastating diagnosis of an incurable chromosomal condition called Patau’s syndrome. For the remainder of the pregnancy, there were no guarantees that our son would make it to full term and, if he did, how long he would live.

Evan lived for 10 hours.

Evan fought hard and filled those precious hours with endless cuddles and everlasting memories. He met his very proud big sister (Dorothy), loving grandparents and uncle. 

During one of our many hospital appointments, feeling heartbroken and lost, we were told about Little Havens, our local children’s hospice.

After visiting the hospice, we knew immediately that whatever the outcome, we would spend the time following Evan’s birth with them. 

Little Havens are a wealth of care, compassion, hugs, shoulders to cry on, hot meals, cups of tea, cake, and so much more. Evan’s death was not straightforward. Had it not been for the Care Team’s guidance and knowledge about the signs Evan was in his last hours of life, our experience would have been even more traumatic. The Care Team took away our fear and substituted it for bravery, giving us precious time with Evan.

When Evan died, it was like falling down a rabbit hole. You emerge into a new reality. The old you is gone, and there’s no going back.

Little Havens became our much-needed safe bubble, and we stayed with them and Evan for a week. Being surrounded by such warm, supportive and professional staff meant we had the time and space to process all that had happened. 

During our stay, we were helped with the funeral arrangements and encouraged to make keepsake foot and handprints. Even though Evan was forever sleeping, the Care Team treated him with the utmost respect and even wished him a good morning and goodnight. These little moments are everything to a family like mine.  

Without Little Havens, we wouldn’t feel as positive and strong as we do now.

Evan’s life was short, but he continues to have a massive impact on all of us, and we are forever changed for the better.

Grief affects us all differently, but for those lucky enough to experience a guiding light of support from counsellors, friends, family and charities like Little Havens – it takes time – but day by day, you start to feel a little brighter.

Given our family’s loss, we still consider ourselves lucky and have been blessed with two daughters — Dottie (Evan’s older sister) and, more recently, Norah.

Each year we have a family day to celebrate the short life of my beautiful little boy. Our day always starts the night before. My wife paints a pebble with the year that marks his age, and I arrange a numbered flower oasis. In the morning, we take these to the cemetery and spend a short time wishing him a happy birthday and thanking him for the many gifts he has given us. We then set out to have the most fun and enjoyable day possible. This year was the Harry Potter Studio Tour.

My motivation for fundraising for charity and now working at Havens Hospices, is Evan and the thousands of families who need the same level of love and support we received.


Baby Loss Awareness Week runs from 9th to 15th October every year and is an opportunity for those affected by pregnancy and baby loss and their families and friends to unite with others across the world to commemorate their babies’ lives and lost pregnancies.

Little Havens provides specialist palliative and supportive care for babies, children and young person diagnosed with complex or incurable conditions. However long we care for a family, we focus on ‘Making every day count’ and helping them create precious memories together.  If you, or someone you know, could benefit from the care and support at Little Havens please click here. 


After visiting the hospice we knew immediately that whatever the outcome, we would spend the time following Evan’s birth with them.

Aron, Evan's Dad