In April of 2019 we welcomed our first baby, little Phoebe, into the world, a lovely water birth at home. Phoebe grew and developed into the most beautiful, smiley little girl hitting her early developmental milestones as expected.
As 2020 approached there were signs that Phoebe's development was slowing so we took Phoebe for some tests at the beginning of the year. When the final results came through it was devastating news for the family, Phoebe was diagnosed with Krabbe disease; a rare genetic disorder of the nervous system; a very rare disease affecting around 1 in every 100,00 babies born. Life expectancy of children with early infantile Krabbe disease is approximately 2 years.
We threw ourselves at the idea of making memories with Phoebe to cherish forever and for Phoebe to enjoy many of the little things in life that would make her happy. The plan was to create these memories with family and friends and our list included: playing with jelly, walking with a dog, touching snow, painting Phoebe's nails, riding a bike, meeting Santa and to have a tea party, to name a few.
Then lockdown occurred, literally days after the plans started. With Phoebe falling into the extremely vulnerable group we had to self-isolate at home, missing precious time with family and friends.
That's where Children’s Hospice South West came in. The staff at Charlton Farm, just outside Bristol, were incredible. They made it possible for us to make special memories in a safe and relaxed environment. We had time in the hydrotherapy pool, had fun in the garden going on a ‘lion hunt’, had time in the paddling pool outside splashing, Phoebe had music therapy, played with jelly, did footprints, organised and accompanied us on our trip to Noah’s Ark and they arranged a whole Disney Day for Phoebe, including Princesses, Mickey and Minnie Mouse, a treasure hunt and a special message from the Lion King cast. Not only did they allow us to make these memories, they were there to help with all the medical side of Phoebe’s care - medications, nutrition and helping us to make informed decisions on Phoebe's end of life care.
Phoebe passed away peacefully on the 20 September 2020 after a stay at the incredible Charlton Farm, with us and teddies by her side. She was 17 months old.
We still have contact with Charlton Farm and have been to a bereavement session to remember Phoebe. We want to keep sharing Phoebe's story to build awareness of CHSW and raise more money for this fantastic charity.