Elodie’s Aplastic Anaemia Journey

The definition of Vivacious – “Lively in temper, conduct or spirit”. I would say that all of these words describe our Elodie.

Elodie is 4 years old and due to start school in September. Just as she was graduating from Little Willows Preschool and due to have a summer full of sunshine walks, paddling pool splashing and park visits, she started to get achy and itchy legs, dark wee and dull eyes. A quick visit to the GP for a once over and she’ll be back to herself in no time – right? That was not to be; the GP was great and sent Elodie straight to West Suffolk Hospital and after numerous amounts of blood tests, cannulas, platelet transfusions, ultrasounds, finger pricks, wee samples, stool samples and nose swabs; Elodie was transferred to Kings College Hospital in London. The only diagnosis was hepatitis but not any of the ones that are known, Elodie has tested negative for all of those so we are on uncommon ground and the Doctors can’t find the cause for the inflammation of her Liver. Since being at King's, there have been so many more tests, a more invasive bone marrow biopsy and a PICC line fitted as Elodie’s blood levels are not normal and her immune system seems to be fighting against her rather than with her. Until her blood issue is resolved there can be no further liver investigations because ultimately what is required is a liver biopsy and this will currently cause Elodie to bleed too much as due to low platelets her blood is unable to clot so this would endanger her further. Her liver functioning “numbers” are getting dangerously close to being classified as Liver failure which could result in a transplant being required. There is so much uncertainty around what the next few months may hold.

I would like to say that Elodie is taking this all in her stride and is compliant with taking meds, being pricked by needles and having transfusions but she isn’t, she is completely affronted by the Doctors and Nurses that we know want to make her better but quite frankly she just wants to be at home with her little brother Oscar and her big dog Monty. How do you explain to a 4-year-old that she is confined to a small room and she is not allowed to leave due to the risk of infection for what is currently an indefinite period of time – you can’t; you can just try to make it a little better for her hour by hour.

So that is my reason for starting this Gofundme page – to try and bring some enrichment to Elodie over the coming weeks and maybe months, I would like to try and raise funds for Kayleigh, Ali, Elodie and Oscar to spend time together, travel costs, the additional cost of food whilst in London (whilst still running a home in Suffolk) and also to get Elodie some private counselling towards her ordeal as quite honestly the trauma of this has changed her personality enormously and we want nothing more than to have our fabulous little bundle of fun back. Any surplus money raised would be donated to the Rainbow ward at West Suffolk Hospital, Ray’s of Sunshine ward at King’s and the Ronald McDonald House.

Thanks for reading.

From Tara - a heartbroken Sister and Auntie TaTa to Elodie x