If I had a nickel for every time I explained Prader-Willi Syndrome to someone and they responded with, "There has to be a pill for that - there has to be something that fixes the hunger," we would actually be able to fund a cure. It is unbelievable that there is no known cure for the hunger. Our kids battle so many obstacles but the hunger is surely the most difficult to live with and understand.
I think I do a pretty good job of taking one day at a time but every once and a while the thought of Ellie's future creeps into my thoughts and it can be unbearable at times. I have so much hope that we will find a cure for the hunger in her lifetime but I can not help but fear the time that Ellie will have to live with terrible hunger pains that I can not take away from her. Every time these thoughts creep up I immediately jump into some type of fundraising activity. I use fundraising events as a distraction. When I feel helpless against PWS I throw myself into raising money for research because it is the only thing I have control over and it is the only way I can come up with to help my angel from heaven.
It pains me think that the only thing between Ellie and a cure for her hunger is money. I refuse to let money be what keeps her from feeling full. There has to be a pill for that - I agree! Now we need to find it. It is going to take alot of research and alot of money but, hopefully, it will not take alot of time for us to be able to reply with a 'yes - there is a pill (treatment, anything please) to fix the hunger.'
Whenever someone says 'There has to be something' I tell them 'That is exactly what we think too. This is why we are working so hard to fund research.'
Do people insist there has to be a pill for the hunger when you explain PWS? How do you respond?
Sometimes I go to far in trying to explain PWS, because it is so much more complicated than just the hunger. People don't insist there is a pill, they insist that they are late for "a thing". lol
ReplyDeleteOne thing I don't do is focus on a future that is yet to be determined. I love this line... Prader-Willi Syndrome is what she has and not who she is. In the absence of "a pill", I will find ways to help my daughter overcome obstacles and reach her full potential.
I haven't heard that one yet, but have heard, "can't they just watch what they eat?".
ReplyDeleteGreat post.
Hi, Our daughter Jessica was born on the 12th May 2011 and was diagnosed with PWS in late July,
ReplyDeleteIf anyone can offer us any advice in regards to treatments that would be great , We have an appointment to see an endocrinologist on the 12th of October and at this point we are going to ask about HGH, we are in the UK and we believe there are only 30-35 cases of PWS each year diagnosed here,
Obviously at this time we are still going through some difficult times so any help with factual information would be greatly received, anything we can take with us to the appointment would be ideal.
Kind regards
Chris