learning for a cause

Hello, friends! It's good to be back! We've been vacationing and having fun, but I'm excited to get back to this blog and tell you about everything we've been learning. I think the kids learned more during "summer vacation" than they did all year!

One thing that the kids are really excited about right now is the walk they will be doing on September 22nd: One Small Step for Prader-Willi Syndrome. You've likely never heard of PWS; I hadn't until about a year ago. Allow me to explain...

I have a facebook friend, who I haven't seen in "real life" for many years, but facebook is funny like that - we can feel like we really know someone through their posts and photos, even when we haven't spoken in ages. Anyway, she had a baby girl just a few days after I had Gavin. Through facebook and her blog, we have followed their journey over the last year or so. Her sweet baby girl had many health complications, and spent much of her first year hospitalized. After a whole bunch of testing, the doctors arrived at the diagnosis of Prader-Willi Syndrome (PWS). It is a genetic disorder which causes  dysfunction of the hypothalamus. A baby with PWS has low muscle tone and poor sucking reflex, and motor milestones are usually delayed. Sometime between age 2 and 6, persons with PWS develop an insatiable hunger, and if not closely monitored, they would eat all the time. If left untreated, this could lead to morbid obesity with all it's complications. A variety of other symptoms can be associated with PWS: cognitive challenges, short stature, scoliosis, and many more. Currently, there is no cure for PWS. (All this information and more can be found at the Foundation for Prader-Willi Research Canada website.)

Since the diagnosis, my friend has become an ambassador for PWS, raising money for research, as well as raising awareness. Most recently, she organized a walk to raise funds to find a cure for PWS. These walks are held all over North America. Her event, One Small Step for Prader-Willi Syndrome, will be on September 22nd in Ladner, BC.

The kids like to look at facebook photos with me, so they have seen photos of this little girl in the past. So I told Ella and Liam about the walk, and explained why people do events like these. I explained that there is no medicine or cure for kids who are diagnosed with PWS, but that if people get together and give money, the doctors can do research and try to find a cure. Both the kids, but Liam especially, seemed upset that this little girl would not "get better." So they decided that they would like to do the walk. We talked about fundraising, and the kids came up with some ideas about how they could make money. Some of the better ideas were to collect bottles and cans, and sell cupcakes. Some of the funnier ideas were to "go to work with Daddy" and "just get some money from the bank."

They were so excited, and wanted to start right away. We made our fundraising web page for people to donate online, and after much discussion, they decided to set a fundraising goal of $800 (eek!). We found an old formula can that they made a label for, to collect change in. They ran around the house looking for places that they might find small change, and I was amazed by how much they found! They wanted to start canvasing the neighbourhood right away to collect bottles and cans, but I thought that should wait until people got home from work. As I put Liam to bed tonight, he said, "We forgot to make cupcakes!" I told him not to worry, that we had 3 weeks to raise the money. They also have plans to talk to their family and friends about PWS, to see if anyone they know wants to donate to their walk (so watch out, they are very convincing, and very cute!).

I am so happy to see how excited they are about this project. I think that it is so important for kids to learn empathy; to be able to imagine what life is like for someone else. It would be easy to fundraise for a cause that directly impacts us (for example, Anaphylaxis Canada does a walk every year). But my kids are not directly affected by PWS. They have never actually met anyone diagnosed with PWS. In fact, if we wanted to, we could have ignored the facebook invite to the One Small Step walk, and our lives would have been none the worse. But what an amazing opportunity for them to learn about caring for someone else! By learning about PWS, and talking about what it might be like to live with PWS, they are (hopefully) learning empathy. By working hard to raise money, they are learning about helping others. They are learning about pulling together for a cause. They are learning to be selfless with their time and money. And they will probably even learn how hard it really is to make money!

If you'd like to support their efforts, please visit our fundraising page to make a donation. Any amount, no matter how small, will help towards their goal! I know they will be so excited as they start to see donations coming in!