Phoebe's Story

We are Lotty and Dan - Phoebe’s parents. In April of 2019 we welcomed our 1st baby, little Phoebe, into the world. Phoebe grew & 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.

Then lockdown occurred, literally days after our plans to make memories started. With Phoebe falling into the extremely vulnerable group we had to self isolate at home, missing precious time with family & friends.�
Phoebe passed away peacefully in the September 2020 after a stay in the incredible Children’s Hospice South West with us and teddies by her side, she was 17 months old.

This weekend would have been her 7th birthday. We are so grateful to have a special weekend away to celebrate her precious life. Thank you Ben Saunders Foundation.