Family supported by Rainbow Trust speak about their son’s illness to mark Undiagnosed Children's Day

A family from Reading are helping us to mark Undiagnosed Children’s Day on Friday 28 April by speaking about caring for their three-year-old son whose birthday falls on the same day.

Faith and Jordan Mansfield have spoken about Isaac’s undiagnosed condition to raise awareness for Rainbow Trust, which supports families with a life threatened or terminally ill child.

Undiagnosed Children’s Day is a nationwide event raising awareness of children with undiagnosed genetic conditions, also known as syndromes without a name (SWAN).

Faith and Jordan first realised something was wrong when Isaac was a few months old and he was found to have global development delay which affects his cognitive function and motor skills.

After four long years of tests, Isaac’s disease has not yet been diagnosed. He is fed by a tube and has a range of complex needs.

Rainbow Trust has been supporting the family since November 2014, through their dedicated Family Support Worker Luci Green, who takes them to hospital appointments and visits them at home and takes them out for trips as Faith doesn’t drive.

Rainbow Trust has nine care teams of Family Support Workers across England, including in West London covering Reading helping families at home, in hospital and in the community to make life a little easier.

Faith said:

“Without Luci I would have been struggling to get on buses and trains on my own with Isaac and all of his equipment. It’s really important to have someone nearby who can help and having Luci has made it so much easier. She listens and really cares about what I say and we have had some really good conversations. It helps when Isaac is sick and gives me someone to talk to when I feel a bit low.”

Faith said it was important to mark Undiagnosed Children’s Day and said:

“Everyone gets a label and being undiagnosed is a label but it covers a broad range of things. It’s important for people to feel that they do fit in because they do have a label. Sometimes when you tell people your child is undiagnosed they pry to find out more about it. But undiagnosed is a label in its own right and people should accept that’s what it is.”

Anne Harris, Director of Care at Rainbow Trust, said:

We would like to thank Faith and Jordan for sharing their story to help mark Undiagnosed Children’s Day. Last year, 8% of the children/families we supported had an undiagnosed condition. This increases every year because of advances in medical care and technology. Families may not have a standard treatment plan and may struggle to find information relevant to their child’s condition as well as having no idea of what the future might hold for their child or their family.”