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Imogen, 10, diagnosed with rare condition during second leukaemia battle

PUBLISHED: 12:53 05 August 2020 | UPDATED: 14:04 05 August 2020

Imogen Roe returned home to Norfolk after 100 days in isolation in hospital. Picture: Anna Dagless

Imogen Roe returned home to Norfolk after 100 days in isolation in hospital. Picture: Anna Dagless

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A 10-year-old girl has been diagnosed with a rare disease while fighting her second diagnosis of leukaemia.

Imogen Roe (right) with her twin sister Charlotte is now home after spending 100 days in isolation following a bone marrow transplant. Picture: Anna DaglessImogen Roe (right) with her twin sister Charlotte is now home after spending 100 days in isolation following a bone marrow transplant. Picture: Anna Dagless

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.

Norwich girl Imogen Roe during her treatment for leukaemia during which she had a blood stem cell transplant from an anonymous donor in America. Picture: Anna DaglessNorwich girl Imogen Roe during her treatment for leukaemia during which she had a blood stem cell transplant from an anonymous donor in America. Picture: Anna Dagless

READ MORE: Anonymous donor saves life of girl, nine, who asked mum ‘am I going to die?’

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.”

READ MORE: Imogen, 9, faces Christmas in isolation as she fights leukaemia

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’.

READ MORE: Family of nine-year-old diagnosed with leukaemia for second time get help from festive event

“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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