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Lotty and Dan Smith from Sherborne in Dorset have presented a cheque for £4,000 to Children’s Hospice South West (CHSW).

The couple have been fundraising for CHSW’s Charlton Farm in North Somerset, in memory of their daughter, Phoebe, who died at the hospice at 17 months old.
The money was raised from culmination of fundraising activities by lots of their friends and family, as well as complete strangers who felt compelled to donate after hearing Phoebe’s story. 

Phoebe was born in April 2019 at home. Lotty said: “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 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.”

Lotty and Dan threw themselves into 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,” added Lotty.

Days after the plans were in place the country was put into a national lockdown due to the pandemic.

Lotty said: “With Phoebe falling into the extremely vulnerable group we had to self-isolate at home, missing precious time with family and friends.” 

It was at this point the family were introduced to the services of CHSW.

“The staff at Charlton Farm 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” added Lotty. 

Phoebe died peacefully in September 2020 at Charlton Farm with her parents and her teddies by her side. 

Both Lotty and Dan want to keep sharing Phoebe’s story to build awareness of CHSW and to continue to raise vital funds for the charity which relies largely on voluntary donations to exist.