Help Winnie to walk and talk

Thank you 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 and in a way that doesn’t overshadow her character.  But if you would like to get to know who you are donating to please read the spiel 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 her birth and then multiple times in 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 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 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.

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

During a routine eye operation, we also learnt 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's has a very rare genetic condition.  She is one of only 15 other children in the world known to have this and it is known as a variation of the CDK8 gene.  Winnie is now 9 years old, she is really sociable and intelligent but Winnie is unable to walk or talk and can only hold her head up for a few minutes. As a result learning for Winnie is much harder but she thrives on 1:1 support as well as the usual love and cuddles from ourselves 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 then able to move and stand. In addition, Winnie is very bright and her speech and language therapist is helping her to 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 for Winnie to support her ongoing therapy. We have two main aims for Winnie:1. To support her to learn to communicate via assisted technology.

 2,  To support her to be able to stand for long enough to transfer (this will enable her to use a disabled toilet and will allow her to enjoy life to the full away from home or school)

Whatever you can donate is fantastic and we are truly thankful. Funds raised for Winnie will go towards the 1:1 physiotherapy and speech and language therapy and any other equipment she so desperatelyneeds that will support her in these aims.We can’t thank you enough for taking the time to read about Winnie. Thank youFiona 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.