little Ivy Grace was born with a rare genetic medical condition call Propionic Acidemia, one of only a few children diagnosed every year in the uk. Unfortunately this cant be cured and results in a much reduced life expectancy, she is fed via a feeding tube and needs regular medication day and night. She has spent the majority of her 6 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. 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, 6 weeks ago we 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 4 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.

Recently Ivy suffered her 3rd arrest and had to be resuscitated, 2 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.

We dont 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. xx

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