A woman whose brother-in-law is the only known survivor in Northern Ireland of a rare blood condition is running her first marathon to raise awareness and funds for research into the condition.
Although Ceira Eakin (38) is a member of Kernan Running Club, she is expecting next month’s London Marathon to test her mentally and physically, but is determined to do it for her brother-in-law Philip Ewart.
Philip (30) was diagnosed in August/September 2015 with Hemophagocytic Lymphohistiocytosis (HLH), a rare, life-threatening condition. The disorder primarily affects the immune system of young infants and children, although it can develop for the first time at any age.
Three months ago it claimed the life of 29-year-old Portadown woman Hayley Hazley, a popular mum-of-one, Scout leader and midwife who had battled the illness for seven months.
Philip, who is married to Portadown woman Grace and lives in Armagh, first began to feel unwell on July 18, 2015. The ‘flu’ like feeling continued for five more days and he was admitted to Craigavon Area Hospital, where various tests and scans were inconclusive.
Two weeks later he was admitted to the Royal Victoria Hospital where his condition rapidly deteriorated and further tests were carried out.
However, whilst waiting for results, Philip was rushed to intensive care where he was diagnosed as having HLH.
He was started instantly on chemotherapy and steroids and after responding well was transferred to the City Hospital where he continued treatment for a further eight weeks.
Said Ceira, “Since returning home, it has taken some time for Philip to rebuild his strength to do simple day-to-day tasks and recover from the side effects of chemotherapy.
“He currently visits his consultants every 10 weeks at the City Hospital to check blood levels.
“We are very grateful that with all the treatment Philip received he has survived HLH. However, with limited knowledge of this ambiguous disease the future is still frightening.”
Donations to Ceira for Histio UK may be made to www.justgiving.com/fundraising/Ceira-Eakin.