Winnie D'Arcy

This is an ongoing childhood fundraising page for Winnie D’Arcy that will help her health and development as she grows. 

Winnie suffers from Osteogenesis Imperfecta and Autism and has to date had 7 operations at 6 years old to help to strengthen her bones and physical health. 

This page has been set up to fundraise for Winnie’s ongoing health expenses.

The family would like to focus on fundraising for Winnie to make her life easier and more comfortable. This includes fundraising for her home to become more accessible for her, including the garden, a WAV (wheelchair accessible vehicle so she doesn't have to be tirelessly lifted from chair to chair, equipment she might need eg Wheelchair, supportive seating and therapies to help her along her childhood journey.

Weekly physiotherapist sessions costs around £90 for one hour. That’s an annual cost of £4680.

Winnie’s surgery’s to-date have been an annual event. Costing around £1500 in expenses per stay.

Other costs come with equipment, clinic appointments, treatments, unpredictable poor health and respite.

Winnie has to contend with challenges every day. She requires full time care and anyone who assists her must have specialist knowledge on how to physically assist and socially support her needs.

In the summer of 2022, Winnie, Emma (Winnie's Mum), Steve (Winnie's Dad) and Haze (Winnie's little sister). Moved into a home that provided them with a garden and opportunities internally to make the home suit Winnie's long term needs. The family spend a lot of time at home often struggling to get out so they want to make the garden a haven for Winnie to find respite when she is not able to get out or to school.

The family were given news in September 2022 that the treatment she had been getting for the last 5 years had not been showing any signs of improving the strength of her bones, so they really want to focus more energy on physio and hydrotherapy to improve her muscle tone.

January 2023, Winnie had her 4th procedure on her legs to insert rods into her bones and strengthen them with the hope to one day see her standing independently. Winnie is a full time wheelchair user and needs assistance with all mobility.

The operation on January 19th 2023 has caused her a very slow recovery this year and Winnie has not even been able to attend school from January through to April. This prolonged time has had a huge financial and mental impact on the whole family and causes disruption to all aspects of their lives including work, care, school and needing respite.

Winnie faces challenges every week, she is more often recovering from a fracture then not but she still manages to show progression in her development and keeps the family on their toes. 

"Winnie is a very intelligent and creative little girl who knows exactly what she likes and what she doesn't like. Winnie will amaze you and surprise you all at once and for that reason we want to support and give her all the best chances in life. You want your children to have all the same opportunities as everyone else so that's why we work so hard to fundraise for her and welcome anyone else who wishes to join us along the way. We are so grateful to everyone who loves and supports her."

Winnie's family foresee the funds needed in the future to help pay towards:

A Fully Accessible Sensory Garden including an undercover heated area.

Adaptations to the home, including flooring changes to allow Winnie to independently use her wheelchair around the home, a wet room, some room adjustments and a hoist system.

An lightweight wheelchair that she can use independently.

Therapies including Physiotherapy, Hydrotherapy or sometimes private pool hire to practice muscle building in a safe place, S&L Therapy, Eating SOS therapy, Occupational Therapy and Counselling for the family. 

Further expenses around surgical procedures and traveling to clinic appointments at Great Ormond Street Hospital

Purchases:

We are very excited to have reserved a Peugeot Partner Wheelchair Accessible Vehicle with some of the funds raised. The cost of this is £10,995. Most of Winnie's journeys are very local and very short, they also often involve different journeys to the families routine. Her school run journey will always be different to her sister's and her appointments often clash with the families commutes, so having her own dedicated vehicle will be such a time saver. Lifting Winnie in and out of seats proposes risks to her fracturing so the less we move her the better it is for own safety, not to mention Dad's back. Just in one day of school runs, this involves lifting Winnie very awkwardly 4 times at 16kgs a go and packing her wheelchair down so it can be lifted into the boot and and unpacking it again. With a WAV you have a ramp that goes into the back of the vehicle and allows the user to travel in their wheelchair, completely eliminating any heavy lifting. This not only enables easier transitions in the vehicle but allows our own physical health to improve and help Winnie for even longer. We are so grateful for this buy and extremely excited to share some photo's with you soon!

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