Update: Eleanor was discharged in May to a temporary set up at home while work is undertaken to complete the extension. The hospital team have worked closely with Laura and Mike to ensure an additional room will be provided for Eleanor and they are happy for Eleanor to be at home in the meantime, especially during the Coronavirus outbreak.

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Please help to build an extension so Eleanor can have her own bedroom, a requirement for her to come home from hospital on TPN

Eleanor was born on the 6th November, a seemingly healthy little 7lb12oz girl. At only 5 days old she quickly became very ill and was admitted to NICU for intensive care. Eleanor was extremely dehydrated and had lost 24% of her birth weight. Her dehydration was so severe her electrolytes became rearranged and she went into metabolic acidosis. The doctors took Laura & Mike aside to tell them that their little girl might not make it, the worst news any parent can hear. The Doctors did their very best to bring her back to health but they were at a loss as to what was making her so ill. Numerous investigations came back negative and there was nothing to provide a diagnosis. It wasn’t until Eleanor was enrolled in a research project at Cambridge, that sequenced her whole genome, that Laura & Mike got any answers. Eleanor was diagnosed with an extremely rare genetic syndrome called Osteo-oto-hepatic-enteric Syndrome (O2HE). This syndrome is so rare it was only reported in literature for the first time in 2018, and only four other children worldwide have the condition.

At the moment Eleanor is suffering with the ‘E’ part of the syndrome, which means that her intestines have failed and she can’t eat/drink like a normal baby. Her nutritional requirements are met by daily Total Parenteral Nutrition (TPN) delivered via a Broviac line directly into a vein above her heart. Each day Eleanor has be connected to a new bag of TPN which is a high risk procedure as any bugs that get into her blood during connection could rapidly cause Sepsis. Eleanor has been in hospital since birth and is currently in Addenbrookes Hospital.

In order for Eleanor to come home and have home TPN administered daily by her parents she requires a room of her own and a sterile area to prepare the TPN.

Laura & Mike are desperate to provide a safe space for Eleanor to come home to so that they can finally be a family of four, together under one roof. However, an extension is required to provide an additional bedroom and TPN room and with either Mike or Laura quitting work to become Eleanor’s full time carer they don’t have the money to fund the work. If you can donate anything toward building the extension Laura & Mike will be eternally grateful.

Eleanor 0 days old.

Eleanor at 6 weeks old in the NNUH.