Clara is our feisty, kind and brave little 3 year old, who loves bunnies, Wallace and Gromit, princesses and whose favourite colour is the rainbow.
In March 2024, she was rushed to Bristol Children's Hospital from Plymouth to receive life saving surgery to remove a mass from her back that had pressed against her spinal cord and caused her to lose all use of her limbs as well as being ventilator dependent. She was diagnosed with a Ewing Sarcoma 2 weeks later.
Since then, Clara has been receiving chemotherapy in Bristol which seems to be working to target the existing tumour that could not be removed during the surgery itself. This has been a bumpy road with various infections as her immune system gets wiped out each time and then rebuilds itself, most recently ending up back in intensive care as a chest infection had impacted her breathing and she needed to be moved from her normal home ventilator to the ICU machines.
We have recently found out that there is a part of her spinal cord that has been compressed so much that it has not recovered. It is, therefore, unlikely that she will ever be able to walk or move her arms/hands again.
She currently requires a ventilator to breathe, but there is still a possible plan to wean her off. This is all dependent on Clara herself and how she manages being off the ventilator. Her diaphragm has some function but not completely so this will be a factor in her ability to breathe independently.
Clara will be starting radiotherapy to target the existing tumour and any cancerous cells, in mid-September, however, due to the damage to her spine, they cannot guarantee that there will not be any further damage from the treatment as her spinal cord is not as strong as it once was. This could take away any existing diaphragm function and make her fully ventilator dependent.
Clara has been incredible through the whole experience. She's undergone multiple surgeries including having her hickman line inserted and more recently removed, having her tracheostomy procedure and her initial tumour removal. There have been times where it has been touch and go and despite all of this Clara has continued to smile and be her funny, sweet self. She is the strongest and most resilient person and she deserves to be given the chance to live a fulfilled life.
Clara will not be able to be discharged from hospital until we have a suitable property for her to move to.
With all this in mind, our current housing situation is very up in the air. It is looking likely that there is not a lot that we can do with our current home to make it fully accessible to Clara and so we would need to move to a different property that allows her to move freely around all parts of the house or has the potential to be adapted to be fully accessible. It is really important to us that no part of the house is unaccessible to Clara to help enable her to have a childhood like other children her age.
Unfortunately, we will not be able to get a mortgage to borrow what we'd need to buy something suitable for all of us as a family and so we are very kindly asking for any help that will allow us to get Clara home.
We've all been in Bristol since the 1st April 2024 and there are family and friends that Clara has not seen since then so we do not want her discharge to be delayed due to there not being a suitable home for her to return to.
We really appreciate the kindness and generosity we have received so far and anything that you can donate to us to get Clara home would be graciously welcome.