My name is MAYA. My my name means" DEVINE CREATIVE FORCE IN EVERYTHING". I am nine years old and I love birthdays.
Making every moment count......That is my mummy's motto...... I am just like other little girls my age only I have many daily challenges. I love the simple things in life, blowing bubbles, painting, playing with my cousins, listening to Grandma on the phone, the Wiggles, school (when I am well enough to go) and learning new things.
It was 5.25pm on the afternoon of the 05.05.05 when I made my entrance into this world. I made it in style, with a team of 20 specialists and nurses in the operating theatre ready to meet me. Just 23 hours later, I had my first major surgery. This surgery took 12 hours and involved a team of neurosurgeons and plastic surgeons to repair a large whole in my back where my spinal cord was on the outside and to operate on my brain, as well for Hydrocphalus. As my mummy Bec and my grandma and poppy waited in a small waiting room just near my mummys hospital room, my mummy knew this was the beginning of a journey of love, tears, laughter, heartache and worry. This operation was the first of 63 operations that I would have to date.
What my mummy didnt realise was that she was about to begin a life with a gorgeous highly spirited little lady, who makes her laugh daily with my warped sense of humour.
I was born with a condition called Velo Cardio Facial Syndrome. It results from a deletion in my number 22 chromosome pair. As a result of my VCFS I have 27 serious medical conditions and five diagnosed disabilities. We could go into all of these in detail however it's more important to share how these disabilities and medical conditions affect my daily Life.
I use a wheelchair for my mobility because I cannot walk as I am an incomplete paraplegic. I have restrictive lung disease so I need to have oxygen running via nasal prongs so I can breath.. I am oxygen dependent when I am asleep or unwell. I have a special button in my tummy so mummy can feed me and give me my medicine. I cannot go to the toilet like other people and my mummy has to use cathetors every four hours to help me. I also have a special bag called a stoma bag that my mummy also takes care of, because my bowel is outside of my tummy, as I now have full bowel and bladder failure.
Some of my medical condtions are life threatening and in recent times I have been refered to the Paliative Care Team. Sometimes due to my medical issues mummy has to give me injections for my adrenal insufficiency and monitor my diabetes, as well as help me with all aspects of daily living. I sometimes have epileptic seizures and mummy manages those too. My mummy is my hero.
We go to a lot of hospital appointments and mummy and I spend weeks and weeks in hospital every year as in- patients, but mummy and I still have fun and manage as best we can given our difficult and unusual circumstances.
The cost of caring for me given my many medical issues and disabilities far outweighs my mummy's carer payment as a sole carer. Every year we fundraise to meet my basic medical, therapy and equipment costs that are not covered by any government funding. This year is no different. Please help my mummy and I to fundraise and spread our message so that we can continue to spend special times together by:
? Becoming our Mate
? Sponsor our team by making a tax deductible donation
? Promote awareness by emailing Maya’s web page to your friends and family
? Join us on 7th September for the Riverwalk
If you would like to learn more please email my mummy on email@example.com or check out my special cause page on Facebook called ‘Maya’s Mates’, where you can follow my achievements.
All funds raised are managed by The Developing Foundation Inc. 90% of the funds raised go directly to Maya’s special needs. The balance is used to cover administration and credit charges. All donations of $2 or more are tax deductible and you will not receive any additional credit card charges.
My mummy and I appreciate any support you are able to offer us. Help make every moment of my life count for me.
Maya and Rabecca (my mummy)