Seriously ill two-year-old toddler with rare condition given special treat

A two-year-old girl from Halton with a very rare and serious condition has been given a free holiday to enjoy with her family.

Ruby, who lives with her parents and two older sisters who are four and six, has Pearson Syndrome - a very rare condition that usually begins in infancy and affects various parts of the body, in particular the bone marrow and the pancreas.  

The Kentown Children’s Palliative Care Programme in North West England has reached its one-year milestone, supporting over 128 families like Ruby's across Lancashire and South Cumbria. 

Launched with the needs of children with life-limiting and life-threatening illnesses - and their families - at its core, families have described the initiative as ‘transformative’.  

Funded by The Kentown Wizard Foundation, the ground-breaking programme comprises Rainbow Trust Family Support Workers, Together for Short Lives Family Service Coordinators and Specialist Children’s Palliative Care Nurses from five NHS Trusts across the region. 

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Join our new WhatsApp Community to get the latest news and top stories from across Lancashire directly to your phone. Sign up for our free newsletters now A Rainbow Trust Family Support Worker visits them every six weeks, helping them practically and emotionally and providing support to Ruby’s siblings Connie and Freya.  

A Together for Short Lives Family Co-ordinator has been able to help them to access a free holiday and support locally in her community.  

Nikki, Ruby’s mum, said: “Our Family Support Worker plays with the other children and we get to be a family together. Sometimes she takes my older daughters out for the day.

"I cannot explain how much of a difference she has made to us as a family. It has been transformative.” 

The family were also able to enjoy a short, local holiday that was organised by the Kentown Family Co-ordinator:

Nikki added: “We had an incredible time. It can be difficult for us to make plans with Ruby but we all had a wonderful time as a family. I am so grateful.” 

A Kentown Nurse will soon be assessing how they can best support Ruby’s palliative care needs at home.

Andy Fletcher, Chief Executive of Together for Short Lives, said: "We set out with an ambition of reaching more families across the region than ever before, and after an incredibly successful first year, working in collaboration, I am thrilled to see the difference this programme is making to families in the region."

A three-year study is currently underway to evaluate the impact this new approach to palliative care is having on families.