On Sunday May 26 our family will be taking one SMALL Step to help raise funds for critical research to help eliminate the challenges of Prader-Willi Syndrome. We are once again asking for you to support us.
Allie is now three years old. We are so proud of Allie and how far she has come - from a tiny quiet three pound baby to a beautiful energetic toddler.
Allie is like any other toddler. She’s has a terrific sense of humor. She’s smart, silly and fun. She loves nothing more than being outside. She loves pushing her stroller, the slide at the park and on our most recent trip to Florida we discovered she may be part mermaid. She loves to sing. She thinks everything is yellow. She loves her dolls and treats them like her children… I now have a Rachel, Emma, Mommy, Ava, Julia and Cassia to tuck in every night.
Allie continues to work hard at multiple therapy sessions every month; physical, occupational and speech therapy, as well as attending many other medical and health appointments to help make sure all of her body’s systems are working as effectively.
We set small goals for Allie. It may sound easy but our goal now is to get her to jump. Getting air under those feet is a tall goal for Allie. Her low tone means she has to work harder to run, jump and play. Keeping her active is an important part of her therapy - so we saving for safe outdoor trampoline.
Allie just completed a nine week speech block and her speech has taken off. Her favorite phrase is “Let’s go play!” I just love hearing her little voice. Like most three year olds, she has trouble with balance and co-ordination so the most spoken phrase now is “You help me mama?” to which I always respond. “Of course Allie, mama will always help you”.
Allie is does face challenges. While insatiable hunger has not set in - we have to constantly monitor her diet. We try as much as possible to keep food out of sight out of mind. Allie has a keen interest in food. The other day after her breakfast she asked for more cheerios, and then she asked for chicken, then bananas. She struck out on all three – it’s a struggle for me to say no...It’s natural for a mom to want to feed her little one. We would like to save Allie from the feeling of being constantly hungry. We want to save her from living in a house where the pantry and fridge is locked and we have to watch everything that we eat. We want her to Live Life Full!
Finding a way to prevent this from happening is why research is so important to our family.
There are many ways you can show your support. You can continue to show your love and support with your kind words. You can ask us questions about this crazy syndrome and how it affects our Allie. You can join Allie’s Allies and walk with us.
Please join me and donate now!
The love we receive from our family and friends is our strength.
Mike, Lisa and Allie
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/.