Thank you for visiting my page dedicated to our little hero, our Maya!
As most of you know, Maya entered this world very quietly and peacefully in the evening of May 27th... As soon as she was born, she was rushed to the NICU where we stayed for the next 3 weeks. During this stay we received the diagnosis - our little perfect daughter was born with Prader-Willi Syndrome. It was so overwhelming to learn so much about this never heard syndrome, while dwelling with being first time parents!
So it began - the doctor appointments, the therapies, the continuous learning about diet, supplements, what works, what doesn't, the latest research and news about what will the future will look like for our little one. At that point, very grim.
Last year, Maya had a whooping 140 doctor & therapy appointments - speech therapy, occupational therapy, physiotherapy and her favourite - horseback riding therapy!
And on top of her already busy schedule, we added preschool - 4 times a week at the amazing Centennial Infant and Child centre, dedicated for children with delays in development. Here Maya is thriving, making friends and through the guidance of her teachers and program volunteers, she is making remarkable progress on her road to JK, which she will start in September.
Even though she has still lots of work ahead in a lot of areas and the syndrome's ugliest part is starting making an appearance in our home, the future never looked brighter for Maya and her peers. There are 2 potential treatments in the last stages of trials, and we feel very hopeful that one of these medications will help Maya, even a little bit, to overcome some challenges in her life.
And this is why we are fundraising - as this is such a small cause, all the money needed for ground-breaking research are raised by YOU - our family and friends, our network! The doctors say she was 1 in 25,000.... But we say she is one in a billion... Her smile is infectious, her hugs and kisses are simply the best and her love for everyone and everything around her is genuine.
Come and join us on the 26th of May for the walk, to help get one step closer to helping our Maya live a fulfilling and independent life!
Funds raised will be used to advance PWS research through the Foundation for Prader-Willi Research Canada. You can learn more about PWS and the research that is underway at http://www.fpwr.ca/research/.
Please join me and donate now!