Lucy Thompson is a four year old girl from Mullingar Co. Westmeath. Lucy was born in October 2018 and, during her first year of life, was diagnosed with a rare genetic disease called Zellweger syndrome. nbsp; Zellweger syndrome is a life limiting disease, which is progressive in nature. There is no cure.

Lucy is a beautiful happy little girl who has always been full of mischief and, up until she was 3 years old, loved to bum shuffle around her house listening to her favourite music and playing with her toys. Living at home with her mam Carla, her dad Kris, and new baby sister Romy, her condition has unfortunately regressed a lot in the past year. During the first months of 2022, Lucy suffered from severe muscle spasms. Her medical team in Temple Street are monitoring and adjusting nbsp;her medication doses on an ongoing basis in an effort to keep her pain under control. Lucy nbsp;is fully dependent on her parents to fulfil her daily needs. She is wheelchair dependent due to the progressive degeneration of the muscles in both her upper and lower limbs. nbsp;She has only involuntary movement now. In June 2022, Lucy was fitted with a PEG feeding tube.

As Lucy rsquo;s condition is life-limiting and progressive, this fundraiser nbsp;has been set up to assist her family with the cost of adapting their family home to meet her needs. Lucy lives in a two story house with her bedroom and one shared family bathroom upstairs. She must be carried up and down the stairs and from one room to another numerous times a day by her parents.

The aim of the home improvement is to create an accessible home for Lucy so that she can be cared for in a dignified manner and enable her to integrate with and enjoy life with her family. Lucy needs a downstairs bedroom with space for her electric bed and pressure relieving mattress and a ceiling hoist to aid her parents with her movements from her wheelchair to her bed and into a much needed wetroom. Lucy needs a wetroom which will allow her parents to comfortably wash her and attend to her hygiene needs. An accessible kitchen/ living space is required so she can join her family at mealtimes. nbsp; With a condition like Lucy rsquo;s comes a huge amount of medical supplies and equipment so storage space is needed to house all of Lucy rsquo;s equipment, including her peg feeding materials, her wheelchair, her p-pod along with her many splints and aids used for physio.

Hopefully we can raise much needed funds to help create a positive amp; comfortable living space for Lucy and alleviate the constant added stress her family are faced with as a result of their ongoing struggles with their standard home so that they can continue to make happy memories together.

Lucy's Lifeline

Jemma Purcell

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