Did you see Elsie on last year’s BBC Children in Need? Noah’s Ark receives a 3-year grant from Children in Need to part fund our Specialist Care Team. Last year BBC Children in Need featured a film that followed a day in the life of Jules, one of our Specialist Carers, which included a visit to Elsie. Read about the impact that Jules – and the whole Noah’s Ark Team – has had on Elsie and her family here…
“Elsie was so very wanted when she was born on 23 February 2013. When they didn’t give her to us in the delivery room, we started to panic a little and knew at that point that something was wrong.
Elsie was diagnosed with Down’s syndrome and she also had a condition called TAM (Transient Abnormal Myelopoiesis). The Haematologist explained that one in five babies with TAM will develop Leukaemia by the age of two.
We so hoped Elsie would be one of the lucky ones. But at 18 months old, Elsie was diagnosed with Acute Myeloid Leukaemia and started an intensive four month course of chemotherapy.
We were so relieved when we were told she was in remission. Devastatingly, Elsie relapsed within two months of being home and we weren’t given much hope at all.
We were told to think seriously about palliative care, as babies who relapsed so quickly rarely went into remission for a second time and even if we were lucky, Elsie would then need a bone marrow transplant.
We eventually made the nerve-wracking decision to put our precious girl through chemotherapy and against all the odds, Elsie did reach second remission. We found a bone marrow donor and miraculously Elsie survived the harsh transplant procedure.
Jules, Noah’s Ark Specialist Carer, was there to help and support us when Elsie finally made it home in November 2015.
In the early days, Elsie needed constant supervision as she had a Naso-gastric tube in her nose and was attached to a fortified liquid feed – when Elsie moved, you had to move too.
Jules was there to give us respite and wouldn’t let us do anything that he could do instead. Jules is totally in charge when he’s here. He comes in and says, “Right, it’s Elsie Time!”
Elsie revels in the undivided attention, stimulation and care Jules can give her and is completely comfortable with Jules’ lovely character.
We can’t express enough the positive impact Noah’s Ark has had on Elsie’s recovery and development, as well as on us as a family at this difficult time.”
Helen and Arun, Elsie’s mum and dad.
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