What does it mean to be part of the WHS family? Wolf Hirschhorn Syndrome gives our youngsters huge obstacles to overcome, the range of which is massive. They all have to fight one thing or another. Life is harder for them than it should be! Aaron has physical and learning difficulties, and a whole range of serious health issues. From horrible headaches, joint pain, chronic and painful constipation, to renal and heart problems, and nasty epilepsy. Life for our guys is challenging at the very least. The other thing they share though is their loving, caring, stubborn personalities. Their ability to get under your skin and make you fall for them. The smiles that can melt your heart! Being part of the the global WHS family is awesome. Keeping up with the progress our youngsters make is truly wonderful and often very humbling. Its the achievements that are really something to watch. All really amazing first time things like, .... Starting to feed without a tube, reaching out to touch something, eye contact, a smile, sitting up, moving in some way unaided, walking, signing, swimming, riding a bike, feeding themselves, playing with a toy, gaining weight, starting to sleep at night,. . . All things that most families take for granted, but we celebrate finally getting there. Not just our own youngsters, but everyone elses too. Thats what being part of the WHS family is about, its the sharing! Sharing the celebrations and pride at the steps taken. Sharing the wealth of knowledge that we have. Knowing that we all get it. Knowing that whatever it is we need to talk about or understand better, someone else has usually experienced it already, and if they havent theyll support you anyway. Its also the other sharing, the fear, worry and the sadness. When one of our youngsters is poorly we all share concern. When one of our youngsters loses their fight we share the sadness and grief. We all feel it. We share that too. Its then that we share the caring, love and support that we have with each other. When the global family steps forward to show that the families have the support of all of us. I am proud to be part of something so amazing.
Posted on: Tue, 23 Sep 2014 14:45:40 +0000
Trending Topics
Recently Viewed Topics
© 2015