Funding research to Live Life Full

Prader Willi Syndrome is a random occurring chromosome deletion from chromosome 15. The hallmark feature of PWS is hyperplasia, (insatiable, unrelenting, incurable, 24-7 brain-driven hunger that has been compared to feeling like you haven’t eaten in three days).

A typical day for Jude is much different that I was used to as a nanny. More days than not, he has therapies, we would practice speech in the mornings, physical therapy after school, occupational tasks any chance we got, we tried to make every minute a learning experience. To put into perspective this boy attends 30-40 therapy sessions a month. Where he learns to pronounce words and how to lay his tongue, or round his lips to create the correct "sh" sound to pronounce "ship" or "shave", or he learns to jump, ride a scooter, walk down stairs with alternating feet, put his shoes on by himself, hold a pencil, and many, many more everyday tasks that we all learned naturally, all while feeling as if he hasn't eaten for three days. I watched this boy struggle to keep up with his peers in running, trying to communicate, climbing play ground equipment, staying focused, handling anxiety attacks about what is coming next, and the list of challenges goes on...

I would watch this boy tackle challenge after challenge, all while taking in the world around him as such a beautiful, kind, and magical place. I often wonder how does he do it? Why has a CHILD been robbed of a "regular" childhood? Will there ever be a cure? Who would Jude be if he wasn't burdened by a missing chromosome piece? I cried and still cry many nights as I reflect on my days and my journey I got to be a part of while being his nanny.Watching Jude be out casted, misunderstood or even misjudged would leave me so angry. I would get angry and frustrated when he fell while trying to run with his little buddy, angry because he was walking up the stairs and his legs failed him, angry because he was asking to eat every few minutes on his off days, angry because no human should ever have to tell a child, “no you cant eat right now”, or have to take food away from a CHILD, and because somedays I just wanted to play with him, but instead he had a date with another therapist.

But, through all this anger and heart ache is a boy who has taught me patience, the ability to try to see the world as a pure and safe place, imagination and creativity, adventure, and has been able to heal a heart that often times is broke at night or on weekends. Come Monday morning he reminds me what unconditional love feels like, endless laughter, the warmth of a boy who relies on you, to help when he has fallen, to understand when apraxia has taken his voice, to stand up for him when other kids think they can walk all over him, or people are judging while we are out in public, and my favorite: to voice his imaginary friends. This is a boy who will point out that the girl in the book Molly Lu Mellon has nice teeth, when she's being made fun of for buck teeth, or she has pretty black curls, and nice blue eyes. He points out the beauty in life that I so often over look, like the lush green leaves on a tree, how the sun feels so warm on your skin, and when walking home in the rain, he reminds me to truly dance in the rain and soak it all in.

For PWS we say "Live Life Full", and although they may never know what it feels like to have a full belly, we constantly encourage and tell him that even though he has a special belly, he can live his life full! Full of adventure. Full of experiences. Full of unconditional love and laughter. Live Life Full- live life for every minute of every day, tell your loved ones how much they mean, soak in the beauty of scenery, and make a friend any chance you get. 1 in 10 people are battling a rare disease and although to the naked eye, you may not see PWS in the child who is melting down in public, or keeps trying to talk to you in the line as you wait to be checked out and get on with your life, but that’s just it, we don’t know what mountains anyone is climbing, so just be, KIND.

With the proceeds from these shirts, we can help fund research for Prader-Willi Syndrome and maybe one day, we won’t have to tell a child who is begging for food, “No my darling”, because that right there, was the hardest part of it all.Telling a child who depends on you and to them the hunger is REAL and your the key holder to the food, and you have to look them in the eyes and tell them, “my baby, you just ate”.