Winnie D’Arcy’s Story

Raising a sick or disabled child doesn’t just mean purchasing one mobility aid, or simply attending a few therapy sessions. For many children, it can affect all aspects of their life, meaning they need support with their home set up, accessing various types of therapies, purchasing multiple items of specialist equipment and needing an adapted family vehicle. Winnie’s family need to raise funds for her multiple needs, so Tree of Hope are here to support their journey throughout!

Seven-year-old Winnie lives in Essex with her Mum, Emma, Dad, Steve, and little sister, Haze Winnie is a determined character who knows exactly what she does and doesn’t like and is a huge nursery rhyme fan, so much so, she requested that guests to her recent 7th birthday party sang ‘Incy Wincy Spider’ rather than Happy Birthday!

The day Winnie was born, it was noticed that she had an arm fracture. Subsequent X-rays  then revealed numerous fractures and curvature of the spine which raised some red flags that all wasn’t as it should be, and Winnie later received a diagnosis of Osteogenesis Imperfecta (also known as Brittle Bones or OI) at the age of 3-months. She was referred to Great Ormond Street Hospital and has been under their care ever since. Winnie is a full-time wheelchair user and has undergone seven operations to help strengthen her bones and physical health, but despite this has still suffered numerous fractures. Winnie is also affected by a bleeding disorder which is likely to cause issues in the future and also has a diagnosis of autism.

Her combined diagnoses mean Winnie and her family face a number of challenges in their daily life. Winnie struggles socially and due to her brittle bones, it is challenging for the family to get out and about together. Mum, Emma told us “It is hard to find things to do that are safe for Winnie as well as being enjoyable. If we go to the park we have to go early or very late when it’s not busy. If I could put a load of bubble wrap around her I would!” Emma also told us “Home has become our haven where we can invite family and friends over and know that Winnie is safe.”

The family have found Winnie’s condition an isolating experience as Dad, Steve has given up work to become her full time carer, and Winnie’s little sister, Haze has a very different experience to her peers due to her sister’s additional needs.

The D’Arcy family joined Tree of Hope in February 2023 and with amazing support from their family, friends and local community, have raised an impressive £24,459 in just 10 months. One of their fundraising highlights from the past year was a Boxing Day Duck Race, suggested by a friend of the family! Costing £5 a duck, a whopping 520 rubber ducks took part in the race for the first-place prize of £250 and plenty of runner up prizes too! This funny fundraiser raised a brilliant £2,800!

Another fundraiser, supported by the local community was a Physical Activity Day. Emma told us  “It was a really great day. We had recently moved to the area so it was a good way to meet people. Not only did we raise £1,216, but it was also really beneficial for my physical and mental health. People are already asking about the next one, so it will definitely be repeated in 2024!”

A family friend of Winnie’s also got involved in the fundraising by holding a sponsored haircut. Alf Brown had his hair cut after six year’s growth, and not only raised £2080 for Winnie, but he also donated his hair to the Little Princess Trust who will turn his hair into wigs for children who have lost their hair through cancer treatments.

Having had a booster start to their fundraising campaign, the family have recently been able to use some of their hard-earned funds to purchase a Wheelchair Accessible Vehicle (WAV) and has already had a very positive impact on the family’s ability to get out and about together. Emma said “The WAV has been a great family car for us. Not having to lift her wheelchair in and out has made all the difference to mine and Steve’s backs! It has been a godsend and we’re so chuffed to have raised the money for this through fundraising.”

Further fundraising is very much needed for Winnie so the family continue their campaigning to help her in every way possible. Hydrotherapy is vital for Winnie to practice muscle building and allows her to in a safe environment and reduce her fracture risk.  The family also wish to change the flooring in their house so Winnie can independently use her wheelchair around the home. Emma commented “Our dream is that Winnie will one day be able to have some independence. If she could learn to weight bear for a few moments, that would be massive for her independence.”

Winnie has had several operations and each operation can cost the family in the region of £1500 in terms of expenses, so with this in mind, Winnie’s supporters have already began planning various exciting fundraisers for 2024 including a springtime afternoon tea, a marathon, and a firewalk!

On asking Emma about the support they have received from Tree of Hope so far, Emma said “We have found everyone at Tree of Hope to have been really supportive. If we have any questions, we always get a swift response back.” She went onto say “Working with Tree of Hope makes us feel very secure and we love the fact that it means our fundraising is very transparent. I sometimes found it hard to keep track of all the funds and payments, but Tree of Hope now manage all that side of things for me. Fundraising doesn’t feel like a pressure anymore, it feels like fun!”

Follow Winnie’s progress at https://www.facebook.com/ wishforwinnie