Supporting Ruby and her family

Ruby is two and lives in Halton, near Lancaster, with her parents and two older sisters, Connie and Freya, who are four and six. 

Ruby 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. Pearson Syndrome also affects the cells in the bone marrow that produce white blood cells, red blood cells, and platelets.   

Rainbow Trust Family Support Worker Angela visits the family every six weeks providing practical, emotional and sibling support.  

Nikki, Ruby’s mum said: “Angela plays with the other children and we get to be a family together. Sometimes she takes my older daughters out for the day, they have been to Blackpool and the aquarium. The girls look forward to her coming so much, I cannot explain how much of a difference she has made to us as a family. I stay at home with Ruby and just get to be mum to her for a little while. It gives you some head space. It has been transformative.” 

A Kentown Family Co-ordinator also visits the family home and has put them in touch with other families with a seriously ill child. The co-ordinator has helped the family access a free local holiday.  

“We had an incredible time, Nikki said. 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: “We are really grateful for the support,” Nikki said.