Esther’s Road to Recovery

Hi everyone.

My name is Charlie and I’m fundraising for our little miracle Esther!

In 2018 Esther was born a happy healthy baby and life was perfect.

For the first 14 months of her life we done all things people do as a family, until one day in November 2019 Esther became very unwell with a sickness bug. She lost a lot of weight and deteriorated very quickly, she lost her ability to walk, talk, swallow etc with no explanation. 

Our whole life had been turned upside down so quickly. We were in addenbrookes hospital for nearly 4 weeks, where Esther under went multiple MRI’s, lumbar punctures, blood tests and surgery, nothing was coming up and then one late afternoon we had some genetic test results back saying Esther had an extremely rare genetic disorder that affected her Immune system and that we would need to be transferred to Great Ormond Street Hospital asap for Esther to have treatment and she would need a bone marrow transplant.

Within 2 days we were transferred to GOSH, more tests MRI’s, CT scans another operation to have a Hickman Line put in. With the consultants now knowing that Esther had an immunodeficiency, they still did not understand why this caused her to loose her ability’s, so after numerous conversations the last resort was for Esther to have a brain biopsy. On the 18th Dec 2019 she underwent the surgery and a few days after the results came back that she had yet another extremely rare virus that she had contracted when she had the sickness bug and had got to her brain where her Immune system had not been able to fight it off and caused encephalitis.

Everything was getting worse, our poor little girl was helpless in the hospital bed for weeks and weeks and after the results from the biopsy another meeting was called with all the teams involved at GOSH and we were told there have only been 7 people in the world to have had this virus and unfortunately none of them had survived. Again, our world was falling apart, bit by bit.

With this news and Esther still not getting better, we started a trial treatments to see if they could help and were told we should make the most of our time left together as family and we left GOSH a week or so after and went to a Childrens hospice.

After almost 2 weeks in the hospice we made the transition home, somewhere we never thought we would go back to again as family of 3 and somehow from there things very very slowly seemed to get better/stabilize and she has never looked back, but we still take each day at a time, as Esther still has her underlying genetic condition as well as the dealing with the life changing effects she been through. 

Esther is on life long medication, needs full time care, she has epilepsy, is registered severely sight impaired, she is non verbal and cannot walk or purposely use her arms and hands, but despite all these things going on in her life she is still the most incredibly happy, funny, beautiful little girl who lights up any room she’s in and will always make you smile.

We started going to physio sessions at the end of the summer this year to see how she got on and she has made such improvement in a small period of time with her head control and small amounts of weight bearing, which is something that was never expected. We want to be able to continue doing this and even try some different types of physio courses, hydro therapy, Occupational therapy and just give her the best possible life and opportunities that we can and we would be SO grateful for any support as none of these things come cheap, but are so beneficial and important for her to achieve her goals. As amazing as the NHS has been for Esther, Physio app’s are not enough with the NHS, she might see them once every 3 months.

This hasn’t been easy and has taken a lot of courage to set this up, as asking for help isn’t something we have choosen to do lightly.

During the whole pandemic we have had to shield and she has missed out on so much in her short life and we want to give her the best in any way that we can.

Thank you so much for any support, thank you for even taking the time to read this, it’s been an extremely difficult journey the last 2 years for us all and still continues to be, but we are grateful for every day with our superstar!

Charlie, Dom and Esther :)