|Jade and myself|
She passed all the usual tests and was declared fit and healthy.
The very next day Jade was rushed to Guy's hospital in London and within 24 hours I was told she would not survive.
I will share all the ups and downs we have had on a daily basis and include exerts from the book I am currently writing.
Prader Willi Syndrome needs to be out there alongside other, better known syndromes of which there is no known cure. With the World Wide web at most of our fingertips, it is wonderful that this little known Syndrome can be bought to the attention of millions of people by simply hitting a button.
|Jade with her puppy Izzy.|
Prader-Willi syndrome is a rare, complex genetic disorder, which is present from birth and continues throughout life. In 95% of cases it is not hereditary and can thus occur in any family. People with PWS are challenged by an untreatable, insatiable appetite resulting in almost constant feelings of hunger, together with immature physical and emotional development. Most have learning disabilities.
Jade has had many negative encounters in her life, mostly by ignorant and rude people. It seems to be acceptable for strangers to stare at Jade and remark loudly on her size. It has caused many upsets and arguments, including an incident where I was escorted from Tesco's by Security Guards. I am sure that particular lady has changed her attitude since!
This blog, for me, is therapy. A chance to rant, rave, laugh and cry but most of all to show off my wonderful daughter and how she copes in a world of excess and prejudice.
Disability also affects the rest of the family. Jades siblings Lucy and Lily have also been subjected to nonsense and ridicule. Fortunately they have both turned into kind, caring and beautiful young women. Lucy has turned her childhood into a career by treading the path into nursing. She currently holds 2 positions. One of which is looking after disabled young adults in residential care. Of course I am a very proud mum!
Lily is still at school and is currently undertaking GCSE coursework. Lily has the most wonderful creative side. She excels in art, drama and photography. She is also the owner of a most beautiful voice. She has not chosen a particular path yet but I am sure she will be every bit as successful as her sister.
I hope you enjoy my blog and maybe take heart in the fact that the very worst news can sometimes be a blessing in disguise. Please feel free to leave positive and uplifting comments.