On Sunday October 12th 2014, our lives changed forever when our baby daughter, Lucy Elizabeth, was born at 4pm and died a short time later. Clare, my wife, had been just under 20 weeks pregnant at the time.

Lucy had previously been diagnosed in-utero with an extremely rare and serious incurable heart condition called Hypoplastic Left Heart Syndrome.

Hypoplastic Left Heart Syndrome is a condition where the structures on the left side of the baby's heart do not develop properly. It is incurable and often fatal. If the baby makes it to birth, the effects of the condition can be reduced with a series of surgeries within the first six months, but these are not without risk and even if successful, the child will have a reduced quality of life and a much lower life expectancy.

As time went on, Lucy's health deteriorated and she developed additional complications. We were told that her chances of survival were very unlikely.

Lucy felt no pain or fear when she was born. The only pain felt was by us. She was incredibly tiny and beautiful - perfect in every way. We were able to hold her and tell her that we loved her before she died.

Lucy stayed with us in a tiny cot in the hospital room that night; we kissed and cuddled her, read her stories, sang to her and held her close. It was quite honestly the most devastating night of our lives.

The next day we found it extremely difficult to say goodbye to her. We have another young son, Aidan, and we wrapped Lucy in one of his old blankets and cuddled her up to his favourite bear (George) from when he was only tiny too. It made us feel better that George would stay with her when we could not.

One week later our hearts were broken once more when, together with just our parents, we said goodbye to Lucy for a final time. She looked just like a tiny, sleeping angel. George stayed with her of course, along with a pink rose from her grandmother's garden, a children's story book and a bracelet belonging to Clare. I carried her coffin into the church and read the bedtime story 'Guess How Much I Love You' to her. 'Songbird', by Eva Cassidy played as we left the church.

Lucy is now buried in a lovely, sheltered spot in the grounds of our parish church. Our vicar was able to bless and baptise her before she left us, and as a Christian family, we believe that she is happy and safe with God.

Though we still cry most days, our once utterly debilitating grief has thankfully lessened as time has gone on and we are incredibly grateful for the unwavering support and love shown to us by our friends and families, not to mention the incredible care we received from the staff at the Women's hospital and all those involved with helping us arrange the funeral.

One source of great support and comfort came from a charity called Little Hearts Matter, who specialise in helping children and the families of children affected by serious heart conditions including bereaved parents like ourselves. With their support and advice we have been better able to gain an understanding of the complex medical problems that affected our baby and start to come to terms with our sad loss.

Like all charities, Little Hearts Matter rely on donations to enable them to continue their incredible work. As a thank you to them for their support I plan on walking the 75 mile long 'Cumbria Way' from South to North through the Lake District National Park. Starting in Ulverston and ending 5 days later in Carlisle, the trek is planned for early July and I will be staying in YHA's each night.

I will be posting regular progress updates both on here and Facebook along with a map showing my daily mileage and details of the route via the 'Viewranger' app.

Your donations will be gratefully received no matter how big or small. To put them into context - a £5 donation pays for the book that Little Hearts Matter send out to all bereaved parents (this was a great source of comfort to us). £10 pays for 3 editions of the LHM newsletter which provides ongoing support and advice to families. £20 will cover the cost of a hospital pack, which is given to families to help them prepare for an often upsetting or frightening hospital visit.

Thank you for visiting my fundraising page in memory of Lucy Elizabeth - our little light. We miss her dreadfully and our hearts ache for her daily but we know that one day her precious soul will find its way back to us. Until then, sleep well my baby girl. I will always love you and you will always be a part of our family.

Donating through JustGiving is simple, fast and totally secure. Your details are safe with JustGiving – they’ll never sell them on or send unwanted emails. Once you donate, they’ll send your money directly to the charity. So it’s the most efficient way to donate – saving time and cutting costs for the charity.