Children at an infants school have raised money for charity after the brother of one of their classmates died of a rare disease.
Pupils and staff at South End Infants School in Rushden organised a mufti day and cream tea and raised £400 for the Our Brave Knight charity which funds research into XIAP Deficiency, a rare genetic disorder that affects boys, after Olivia Clark’s brother Cameron died in May.
Their mother Danielle said: “Cameron was a perfectly normal, healthy three-year-old until September when he appeared to have caught a cold, with a nasty temperature.
“It didn’t go away, and after spending two weeks in Kettering Hospital with test after test, he was transferred to Leicester Royal Infirmary.
“On October 5 we were told they suspected Cameron had Hemophagocytic Lymphohistiocytosis Syndrome and we were transferred to Great Ormond Street Hospital.
“The immunology team there confirmed that Cameron had HLH Syndrome secondary to XIAP Deficiency.
“Our lives were turned upside down.”
The only cure is a bone marrow transplant. In January a donor was found, but Cameron’s body rejected it.
Danielle said: “On Friday, May 30, we were due to have a meeting with both teams of doctors to discuss a plan going forward, this meeting didn’t go ahead. Cameron couldn’t fight anymore.
“His transplant worked too well. The donor cells sorted out a place in his body that was unhappy [his lungs], and wanted to help fix it.
“Cameron’s cells didn’t want the donor cells to help, this resulted in them having a big fight on his lungs. Our Brave Knight is aiming to help research into these sorts of things.
“If I, as Cameron’s mummy, can stop at least one family from going through what our family had to go through then I have achieved my goal.”
Our Brave Knight has been set up to fund research into XIAP (X-Linked Inhibitor of Apotosis) Deficiency, which means your immune system doesn’t work properly.
XIAP Deficiency was discovered as a unique disorder in 2006.
For details of fundraising events go the Our Brave Knight Facebook page.