My name is Kacey and I am 1 year old. I was diagnosed with Prader-Willi syndrome. I have been hospitalized at birth since I was unable to feed myself, I have no strength due to my severe hypotonia (unable to operate my upper body muscles). I am what they call the Floopy baby. I'm back home and still struggle to feed normally. I am very very small for my age.. I have the weight of a 7 months old. My life will be full of challenges and already at my young age, it is filled with medical appointments and followed by a multidisciplinary team (physiotherapy, occupational therapy, nutritionist, orthopedics, neurology, ENT, endocrinologist, genetics and more to come). Every day, my mom has to do exercises with me that make me uncomfortable because for me just trying to lift my head is difficult! My brain sends the information to my muscles but it doesn't work properly and not for a long period of time. I get exhausted 10 times faster than a normal baby. It’s like trying to follow a Cross-Fit workout from a professional but I’m a beginner. Because of that I do sleep apnea and I have a CPAP machine at night that help me breathe correctly. I have and will have delays in growth, motor and mental development for the rest of my life. I will never be 100% independent since my syndrome affects my brain, I am already classified in the category (Intellectual Disability (ID), Autism Spectrum Disorder (ASD) and Physical Disability (PD)). Recently, I saw my endocrinologist and so that I can have a chance to develop a little more normally, they prescribe me growth hormones. It  increase my chances(strength )by around 26%, it's not much but for me it's worth all the gold in the world. I will be able to 100% bottle feed, eat food( not just puree) without chocking and start to be able to use my muscles to turn around, play, crawl, sit and maybe walk before my prognosis which is 18-24 months and more. I wish I could be like the other kids but I know I never will be. But with growth hormones, I will be able to be much more and I want to enjoy my life even if it will be filled with pitfalls. My problem is that my parents cannot afford to pay the full cost of my daily injections until the end of my puberty which is $2000 per month. My dad is a truck driver and he already works 60-70 hours to provide for us (my sister, mom and me) and Mom will not be able to return to work due to my condition. No day care want to take me because my situation is risky. There is no assistance program that applies to us so we do not have financial assistance available. My parents are desperate and only want the best for me.

So, I ask you from the bottom of my heart to please help me obtain my growth hormones so that I can live a little happier and above all play a lot!

Signed Kacey Walter and written by Mom.