A crowd funder appeal to raise money for a sensory room and defibrillator for a little girl born with a rare genetic medical condition has raised nearly £25,000.
Six-year-old Ivy Grace from Penzance was born with a rare genetic medical condition call Propionic Academia, one of only a few children diagnosed every year in the UK.
Her dad Carl Reed started a Just Giving page four months ago to start raising the money and so far it has raised £23,995.
He says unfortunately the condition can’t be cured and results in a much reduced life expectancy, she is fed via a feeding tube and needs regular medication day and night.
He says she has spent the majority of her six years in hospital with numerous respiratory arrests and even a cardiac arrest.
“Despite all this she is such a happy young lady and takes everything in her stride. She has severe learning disabilities but recently started a local special school which she loves,” says her dad.
“Ivy has been on the waiting list for a liver transplant for 18 months which doctors hope may help her condition and long term prognosis.”
He said six weeks ago they got the call from Leeds Children’s Hospital to say a donor had been found, and she underwent an 11 hour operation, apart from a few complications she has done well and is now home for four months of isolation.
“Her strength and determination is overwhelming and we are asking for help with setting up a sensory room for her to help with her recovery and especially in this isolation stage as she loves sensory equipment and hopefully will aid in her recovery,” he said.
He said recently Ivy suffered her third arrest and had to be resuscitated, two of these have been in hospital and once in the ambulance.
“For this reason we are wanting to purchase a defibrillator just in case the worst happens at home and also some training in resuscitation,” he said.
“We don’t like to ask for help but as every parent knows you will move heaven and earth for your child, any help is massively appreciated no matter how small, we know everyone is struggling at the moment but every little bit helps.
“We hope this new liver will be a turning point for her and we are extremely grateful for any help. Thanks in advance and will keep posting updates as she recovers. All our love Carl and Philippa.”
You can donate to the Crowdfunder here at www.justgiving.com/crowdfunding/carl-reed
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