Story
Phoebe and Rycroft...
Phoebe is a bright, joyful little girl fighting Shwachman-Diamond Syndrome (SDS), a rare genetic condition that has shaped her entire young life and now means she faces a stem cell transplant.
Rycroft was a beautiful baby boy who lost his life to SDS in June 2023, aged just 16 months, after bravely undergoing that same procedure. Two children, two families, one cause.
By supporting SDS UK, you're helping ensure that every family navigating this frightening and isolating diagnosis gets the support, research, and hope they deserve — so that children like Phoebe can thrive, and children like Rycroft are never forgotten.
Phoebe's story...
Phoebe was diagnosed with SDS at 15 months, following recurrent infections and us having to fight for further investigations. She’s spent the majority of her first year in life in hospital, Since having her diagnosis and medication (creon) and the blood transfusion she has spent less time in hospital and being a ‘normal’ little girl causing chaos! Now Phoebe needs a stem cell transplant. It's all very scary and unknown, but we are hoping for the good outcome our little girl deserves.
Phoebe is a happy beautiful little girl who steals everyone’s hearts🥰 Phoebe has a big sister, Heidi, who is the best big sister in the world and they both love each other endlessly.
We hope to be able to work towards further research for better treatments and preventions and ultimately a cure. We would love to raise awareness and fight for better support for the parents having to juggle a poorly child, family and working amongst everything else life throws at people
...Phoebe's Mum, Jenai
Rycroft's Story
Rycroft Alport Foster, our beautiful baby boy, died in June 2023 aged just 16 months old.
He contracted an infection while recovering from a stem cell transplant - his only chance of survival given the severity of his genetic condition, Shwachman-Diamond syndrome (SDS).
On 26th April 2026, Rycroft's dad, Andrew, will be running the London Marathon in his memory, raising funds for other children like him through the work of SDS UK.
The SDS community is small but incredibly supportive—of us and of each other. With super-rare diseases like SDS, it can be incredibly scary and lonely to discover your child is affected. But SDS UK has helped build something special, working to ensure that every family dealing with SDS has the support they need.
We miss Rycroft every day and wish he was still here with us. It's through doing what we can to support other children like him that we keep his memory alive and affirm that his life was a triumph, not a tragedy.
What you can do
Any support, whether you're able to donate or simply share Phobe and Rycroft's stories and our appeal, means a tremendous amount.
With love - Marcus and Jenai, Phoebe's mum and dad, and Catherine and Andrew, Rycroft's mum and dad