On September 23rd 2015, a hurricane arrived. Franké Jai Harvey was born on his terms. This set the path for how he would live the rest of his life. He was the star of the show and we were all along for the ride. Our little guy was very sick. We didn't know it yet, but he had a rare deletion. He was one e of only 50 people born with 3p25 deletion.

Franké had lots of medical interventions to keep him alive. This included heart surgeries, medications and lots of time that he and his mummy spent in the hospital. The nurses became family and the ward became home. He was never afraid to push the limits and is responsiblefor all of our blood pressures being higher than they ever should have been.

At 4 years old, he had complications that led to having a lung removed. This meant that he would not be eligible for more intervention and was given a terminal diagnosis. Alexander Devine was the hospice that looked after him. Frank's mum, my best friend, Sarah, was initially so scared about leaving him. The staff looked after both Franké and Sarah and allowed Sarah some time to just be her. They took care of his medical management and made sure that his last moments were peaceful, pain-free, and surrounded by love.

In December 2024, he was taken to hospital with a chest infection. Unfortunately, he was tired and couldn't fight the infection. On January 5th, 2025, he was put on palliative care, and in the early hours of January 13th, he passed away peacefully in his mummy's arms, age 9.

Franké never lived a life of pain and suffering, he was the biggest, cheekiest character and inherited his mums stubborn energy. in the last years of his short life, he got to visit Disney, and see his hero's, buzz and woody, he got to swim at every opportunity, to spend the most time home from the hospital and making memories with those that love him. He even had a good time seeing santa in lap land. For those that new him, he would kick you before accepting a cuddle, he had perfected a side eye that said everything about how he felt. He would fake sleep so he didn't have to do things at school that he didn't enjoy. Franké taught us all, that love does not need words.

These things would not have all been possible if it was not for the support of the wonderful people at Alexander Devine Hospice.

Alexander Devine Children’s Hospice Service is a charity that provides specialist care and vital support to babies, children and young people with life-limiting and life-threatening conditions, and their families, across Berkshire and into surrounding counties.

We currently support over 200 children and their families, but we are committed to growing our service and reaching out to every child and their family that needs us.