Imogen, 10, diagnosed with rare condition during second leukaemia battle
PUBLISHED: 12:53 05 August 2020 | UPDATED: 14:04 05 August 2020
A 10-year-old girl has been diagnosed with a rare disease while fighting her second diagnosis of leukaemia.
In November, Imogen Roe, from Thorpe Marriott, spent 100 days in hospital, including Christmas and New Year, undergoing a life-saving bone marrow transplant.
The Drayton Junior School student had the operation 250 miles away at Bristol Royal Hospital for Children following a second diagnosis of leukaemia last year.
When Imogen returned home at the start of lockdown, her parents, Anna Dagless and Dean Roe, said her condition was slowly improving but at the start of June “things started to go downhill again”.
Miss Dagless said: “Immy’s kidney function levels had been on the rise for a few weeks, as was her blood pressure. She was having heart palpitations and breathing rapidly at night. A heart echo showed she had excess fluid around her heart.”
The combination of problems led consultants to diagnose Imogen with thrombotic microangiopathy (TMA).
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TMA is thrombosis or blood clots in small blood vessels which, if formed in an organ, cause organ-specific dysfunction.
Miss Dagless said: “It was terrifying news and just another blow for Immy who has already been through so much over the last four years.
“We needed to get medicine in her fast, but there was a huge barrier. The best drug to treat TMA is called Eculizumab and has been dubbed ‘the most expensive drug in the world’.
“The amazing consultants at Addenbrooke’s Hospital worked tirelessly emailing various trusts and people, filling in forms to get funding and fortunately we were lucky enough to be allowed it. We are so grateful. Her consultants have only used this drug in one patient prior to Immy.”
The treatment involves four-hour infusions and an hour of monitoring at Addenbrooke’s Hospital, a three hour round trip from their home, twice a week.
Last month, a fundraiser on JustGiving was set up to raise money for long term after care.
Miss Dagless said: “We are so lucky to have such wonderful friends and community supporting us.”
To donate visit justgiving.com/crowdfunding/chrisclosecutforimmyroe
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