Dan Smith
Dan's page
Fundraising for Children's Hospice South West
Story
Thanks for taking the time to visit my JustGiving page.
I have been offered the chance to take part in the London Marathon 2023 running for the most incredible charity, Children's Hospice South West. CHSW provided love, care and support for Lotty and I, but most importantly, Phoebe during her short but special life and having the chance to run the London Marathon in order to raise much needed funds is one I could not turn down. Having run the 2021 London Marathon I am so excited and honoured to have a second opportunity to take on this challenge and raise as much money as possible for this amazing charity.
Our story: We are Lotty and Dan - Phoebe’s parents. In April of 2019 we welcomed our 1st baby, little Phoebe, into the world, a lovely water birth at home. 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.
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 & friends...our list included: Playing with jelly, walking with a dog, touching snow, Paint Phoebe's nails, ride a bike, meet Santa & to have a tea party to name a few.
That's where the Children’s hospice South West came in. The staff at Charlton Farm, one of CHSW 3 sites, 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 20th September 2020 after a stay in the incredible Hospice South West with us and teddies by her side, she was 17 months old.
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.
I know times are tight, and money is hard to part with, but any amount you can spare would be so valuable to families and children who are in the most painful and heartbreaking of situations.
Thankyou.