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- Fundraising Target:
- $ 47,000.00
- Donations to Date:
- $ 17,063.05
Messages of Support
Hi, my name is Maya . I am 7 years old. I live with my Mummy, Rabecca who is making every moment of my life count, by never giving up on me even when everyone around us says to.
Over the past 7 years, I have amazed doctors and specialists alike with my resilience and ability to defy the medical expectations. When I was born mummy was told I would not live to be 12 months old and best case scenario is 5 years old! My medical conditions are all life threatening and serious but because of the care my wonderful mummy provides for me I am still here, still defying the odds.
I was born on the 5th of the 5th, 2005 at 5,25pm my. I was 4 weeks early and had a large hole in my back, and fluid on my brain and tiny little feet that were facing the wrong way. My tummy and back were wrapped in glad wrap and I was placed on my tummy and put into the Neonatal Intensive Care Unit. Mummy wasn't allowed to hold me and was only allowed to touch my hand. The next 24 hours were crucial for me as my brain and spine were exposed to the outside world and infection was the number one concern. At 5pm the next day at just 23 hours old, I had my first major surgery that went for 8 hours. It was brain and back surgery. This surgery was the first of 40 + surgeries that I would have over the next 7 years.
I have Velo Cardio Facial Syndrome, Severe Spina Bifida, Severe Hydrochephalus and Club feet. I also have Epilepsy, a hole in my heart, restrictive lung disease, central breathing failure, as well as Arnold Chiari Malformation of the brain stem, and 20 more medical conditions. Im oxygen dependent when I am asleep or unwell. I use a wheelchair because I am an incomplete paraplegic. This means I am bowel and bladder incontinent. I am tube feed as I am unable to eat properly on my own.
Mummy has always focused on ensuring my life is positive, pain free and Mummy never gives up on me. Mummy and I chase Rainbows when we see them after the rain, we say goodnight to the moon every night (because I love the moon) and we always say goodnight to each other and "I love you". Until this year I was only able to communicate via sign language. I was never able to speak verbally. My mummy has spent hundreds of hours teaching me to speak and for the first time I am able to say a few words, and they are, "I love you mum, mum ". These are the most beautiful words my mummy has ever heard and they sometimes make her cry.
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. This year I have been experiencing a decline in my brain function in that the regulation part of my brain is malfunctioning. My brain is having trouble maintaining my heart rate, temperature, blood pressure and my pain levels. This has been labelled an autonomic condition that has no known cure or known treatment, that can just be "Managed". I am still waiting to see what “Managed” is going to be.
Mummy and I have been referred to the palliative care team to help decrease my pain levels and to give me the best quality of life as possible without pain. Mummy has always said, "Maya isn't here for a long time, but Mummy will make sure it is a good time." This year mummy wants me to have the opportunity to experience the things that will keep me smiling, and bring me joy. Mummy’s focus is on making every moment count for me.
Our fundraising focus this year is trying to meet the day to day medical and therapy costs associated with my care, as well as home modifications in the form of a carport, which will enable mummy to transfer me from my wheelchair into our car undercover, free from the heat and the rain. I have been telling mummy that I would like to see the snow and often ask her to make it snow for me. So this year mummy said that she will take me to see snow–God willing.
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 16 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)