Winnie's Story

Winnie was born 2ng Aug 2010..
2 months premature..

Born with TAMS cancer and heart & liver failure.
Then we were told Winnie was Down Syndrome.
In shock with the overload of news on our baby girl..
We were given the news on the 20th of August that the nurse in the special care unit at Maidstone hospital had given Winnie a drug overdose.
We were asked to name her..it's was not looking good, Winnie 😕
The hospital was cold and unsympathetic towards us.

This drug caused brain damage and development delay..she also needed a blood transfusion.

But Winnie was strong and pulled through...thank god🙏

She was finally let home, and we fed Winnie through an NG feed tube.. and trained to redus me.
I was put on a heart monitor.

But within a few months of being home, winnie was rushed back into the hospital with phenomena..
It's not looking good.. we need to look at her heart..
It had PDA.. and now needs surgery.

Finally, in Nov 2011, Winnie was rushed to Royal Brompton for life-saving surgery

Winnie's medical problems kept growing..
Then, in Oct 2012, we rushed Winnie to Pembury hospital as she looked so unwell..
Winnie got diagnosed with AML leukaemia cancer..
Winnie was then taken by ambulance to The Royal Marsden Sutton for treatment for cancer..
Winnie lived in the Royal Marsden for 5 mths solid..
Chemotherapy started.. Winnie was so poorly..
Helpless, in pain, and we couldn't help her again..
Our hearts are breaking..
Winnie dad found this extremely hard to handle..
Watching your child Helplessly fight cancer again..
Winnie's dad try to commit suicide..

Then Winnie got an infection and was rushed from the Royal Marsden to St George hospital..
So now I have dad in Maidstone hospital and Winnie in St George's London.. and 3 other children to care for..
Then Winnie's portacath feel out..again for the 4th time.. the surgeon said, down syndrome people have problems with portacath.. so it was decided to stitch it in her neck..
To secure it in..
Just more complications to add to poor Winnie's list..
In March 2013 we left The Royal Marsden..

We were not allowed to take winnie out, as infection would kill her.

Winnie has been left with many disabilities.
Cancer caused her some hearing loss.
Her teeth are messed up..
She suffers from stomach and bowels pain.
Winnie, health today.. she has liver failure and heart failure.
The PDA in her heart has moved into her chamber and gives low oxygen to her blood. Which she is under Evelina children's hospital for.
She has sleep disorder.. which she is under St Thomas for..
She is Down syndrome, and she is under paediatrician at Maidstone hospital.
She is under St Thomas for her teeth..
Winnie delayed learning difficulties/disabilities plus many other medical problems.
She needs 24/7 care.
She has a lower muscle tone. She can't talk but can use some odd words with sign language.
Winnie is still under the care of The Royal Marsden.
And she had been predicted to live up to 25 years old..
Due to all her complications.
Winnie's medical journey is far from over..
But we plan to make life happy and fun and have great memories ❤️

Thank you to everyone at BSF for this much needed break.