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Fundraiser set to provide sensory equipment for Harrogate girl with rare condition

Tuesday, 2 July 2024 06:40

6-year-old Ivy Grace has a rare genetic medical condition.

A fundraising campaign launched to support a young Harrogate girl with a rare genetic condition looks set to reach its goal.

6-year-old Ivy Grace was born with a rare genetic medical condition called Propionic Acidemia and is one of only a few children diagnosed every year in the UK.

Unfortunately, this can't be cured and reduces her life expectancy.

Due to her condition, Ivy Grace requires a feeding tube and regular medication and has spent the majority of her life in hospital due to respiratory issues and cardiac arrests.

But a fundraising campaign that aims to fund sensory equipment and a defibrillator has raised more than £12,400 - just shy of its goal.

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.

Just 6 weeks ago, Ivy Grace received a donor's liver and went through an 11-hour surgery.

Her parents Carl and Philippa said:

“We hope this new liver will be a turning point for her and we are extremely grateful for any help.

“Ivy’s 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.”

Carl and Philippa are looking to purchase a new defibrillator to be prepared if Ivy Grave has another cardiac arrest at home.

They will be posting updates on Ivy Grace's condition on their Just Giving page.

If you would like to donate to Ivy Grace for a sensory room and defibrillator, you can donate here.

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