Wednesday, May 4, 2011

One Small Step

My Adorable twin nieces Morgan & Makayla
It was overwhelming, joy, and excitement when Jack and I found out we were having twin girls. A few days after they were born our joy quickly turned to heartbreak and fear. Imagine seeing your babies not being able to open their eyes, have no reflex to suck, or be strong enough to cry. After 5 weeks of tests, Morgan and Makayla were diagnosed with Prader-Willi Syndrome. The girls would struggle with cognitive disabilities, low muscle tone, sleep apraxia/dyspraxia, obsessive compulsive disorder and an insatiable hunger. Our girls struggle to meet each milestone, appointments with Endo, early intervention, occupational, physio, and speech therapy are our norm. Having our girls know hospital staff more than some family is our truth. As parents, Jack and I could not stand by and just do nothing. We’re not doctors or scientists but were parents and that's a force all its own. Through families across Canada we have been inspired to believe that the challenges of PWS are not unbeatable. We decided that Morgan and Makayla deserved everything all children get to have, a feeling of being full after they eat, the energy to run, play, and keep up to their peers. A chance to fulfill dreams of going to college and living independently. Jack and I joined the FPWR in hopes of raising funds by taking steps towards eliminating the challenges of PWS.


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