The mother of an 11-year-old boy whose immune system does not work is determined to raise awareness of the condition in an attempt to help others cope.
Toby Herbert, from Crawley Down, was just seven years old when he was diagnosed with primary immunodeficiency.
The condition means that, among other things, should Toby develop a cold, he will be unable to fight it off and could be ill for weeks.
His mother, Jo, has to inject him weekly with an immunoglobulin solution called Subgam - an infusion of antibodies which are delivered via two needles inserted in his abdomen.
Toby’s first fell ill in 2009.
Jo received a phone call from his school telling her he had a rash on his arm which they thought might be measles. She also noticed bruising on his legs.
Initially Jo thought the lad had received a bump while playing football but, when the bruises grew larger rather than disappearing, she took him to his GP.
Blood tests revealed Toby had no platelets in his blood.
From the next three months his blood was monitored and, in January 2010, he made his first trip to Great Ormond Street Hospital (GOSH), where he was diagnosed with an immunodeficiency.
Some 5,000 people in the UK have immunodeficiency and, on Saturday (October 12) Toby was invited to join a handful of them at GOSH’s first Patient Fun Day.
The event was held at the London Transport Museum and gave Toby and Jo the chance to meet others who are living with the condition.
Jo said: “It was really nice to meet other people. Nice to know we’re not on our own.”
Toby’s condition has no cure – but Jo is doing her level best to make sure he faces life’s challenges head on and does not wallow in self-pity.
And she is determined to raise awareness of the condition so that others can draw on her experiences as they face their own challenges.
She has become involved with the charity PID UK, which supports families affected by primary immunodeficiency, and is working on ideas to raise money for and awareness of the condition.
Jo added: “We will manage. There may not be a cure but he’s more fortunate than some of the other boys on the ward. I want to be able to help parents who are perhaps at the start of the journey. I don’t want sympathy, I just want to help people.”