Help Winnie to walk and talk

Thank you for visiting Winnie’s Tree of Hope page.

Winnie has had to endure so much in her little life that it is difficult to write about her journey concisely, without overshadowing her character. However, if you would like to get to know who you are donating to, please read the details below or copy and paste the link to watch her video on YouTube.

https://youtu.be/c6zOj2-dI30

Winnie was born by emergency c-section. She had to be resuscitated at birth and multiple times during her first 24 hours. The doctors quickly discovered she had cysts on her brain, and she went into heart failure. She wasn’t expected to survive. At just a few weeks old, Winnie was transferred from the neonatal intensive care unit to Great Ormond Street Hospital for open-heart surgery. Amazingly, this was a success, but she was in the hospital for the first three and a half months of her life. The day we were able to take her home, we felt so overwhelmingly proud and thankful, aware of all she had overcome with the help of so many people.

From discussions with doctors in those first few months, we knew it was likely that Winnie would face further difficulties. We soon discovered she was not moving as expected and did not learn to talk. She also developed epilepsy and required many more operations, including additional open-heart surgery.

During a routine eye operation, we also learned that Winnie’s eyes had not formed correctly, and she was diagnosed with retinal dysplasia, a condition that has left her completely blind.

We only found out last year that Winnie has a very rare genetic condition. She is one of only 15 other children in the world known to have this, and it is a variation of the CDK8 gene.

Winnie is now 9 years old. She is really sociable and intelligent, but she is unable to walk or talk and can only hold her head up for a few minutes. As a result, learning is much harder for Winnie, but she thrives on 1:1 support as well as the love and cuddles from us and her two sisters, Molly and Wanda.

There is good news too. Winnie is a true fighter and has made amazing progress. Physiotherapy makes a huge difference for her. The more she does, the more strength she builds, and the more she is able to move and stand. In addition, Winnie is very bright, and her speech and language therapist is helping her find innovative ways to communicate her thoughts and needs reliably.

Unfortunately, NHS therapy funding is very limited, and specialist private therapy to meet Winnie’s complex needs is expensive. The cost of her therapies and equipment for a year is currently just under £10,000.

We hope to raise enough money to support Winnie’s ongoing therapy. We have two main aims for Winnie:

To support her in learning to communicate via assisted technology.

To help her stand for long enough to transfer (this will enable her to use a disabled toilet and allow her to enjoy life to the fullest away from home or school).

Whatever you can donate is fantastic, and we are truly thankful. Funds raised for Winnie will go towards her 1:1 physiotherapy, speech and language therapy, and any other equipment she desperately needs to support her in achieving these aims.

We can’t thank you enough for taking the time to read about Winnie.

Thank you,

Fiona and James (Winnie’s Mum and Dad)

7.5% of all donations to Tree of Hope in relation to this appeal will be allocated to the general charitable purposes of Tree of Hope to cover our core operating costs.

If we raise insufficient funds, or surplus funds, then the funds will be used, if appropriate, to fund support for our child’s needs in accordance with Tree of Hope’s charitable objects. If in those circumstances we are unable to use all or part of the funds for the benefit of our child in accordance with Tree of Hope’s charitable objectives, then any funds that cannot be used will be transferred to be used for the general charitable purposes of Tree of Hope.