A Plymouth couple have had to endure the worst possible nightmare after their three-year-old daughter Clara Gilley was diagnosed with an aggressive form of cancer that could leave her unable to walk or use her arms again.
Three-year-old Clara Gilley had celebrated her birthday on March 29 this year, but two days later she became unwell and was unable to move her arms or legs.
Her worried parents, Alana and Matt Gilley called an ambulance and she was rushed to Derriford Hospital where she had an urgent CT scan followed by an MRI. To their horror Clara suffered a cardiac arrest while undergoing the MRI and it was an agonising three minutes before she was resuscitated.
The scans revealed a tumour around her neck and spine. The following day, April 1, Clara was transferred to Bristol Children’s Hospital – where she has remained ever since. Two weeks after arriving at Bristol she was diagnosed with a Ewing Sarcoma which was pressing on her spine and caused her to lose all use of her limbs.
Clara, who is described by her mum as feisty, kind and brave, underwent life saving surgery to remove the mass from her back and since then has been totally dependent on a ventilator to breathe.
She has undergone extensive chemotherapy treatment and is shortly due to start a long period of radiotherapy. Her condition is so serious that Clara has spent a significant amount of her time in the hospital’s Intensive Care Unit.
Alana and Matt have now spent more than six months in Bristol visiting Clara in hospital every day from early morning to late at night, with occasional respite when family and friends give them a break from being at her bedside.
They have now launched a £100,000 Crowdfunder appeal to raise funds to enable their home to be adapted so that Clara can home to Plymouth when she is well enough.
Alana, who is a qualified teacher, said:
“It has been a bumpy road with various infections as her immune system gets wiped out each time she has chemotherapy 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 again.
“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.”
Matt, who is a professional photographer added:
“With all this in mind, our current housing situation is very much up in the air. It is looking likely that there is not a lot that we can do with our current home in Plympton 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 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.”
The Crowdfunder appeal has raised more than £15,000 since it was launched on September 1, so there is still a long way to go. To support the fund to get Clara home go to
www.crowdfunder.co.uk/p/get-clara-home#start
