Prader Willi Convention

Can you imagine what it would be like to ALWAYS feel hungry?  Can you imagine if you were genetically built to be this way? Can you imagine what it would be like to only be able to eat half the calories as an average person, just to keep alive? Can you imagine needing a growth hormone that costs  $25,000 a year, and insurances don't want to cover it.  My 13 year old great-nephew Payton knows what this feels like. He was born with Prader Willi Syndrome, but was not diagnosed until a year ago.  His developmental delays were thought to be a result of a difficult birth.  The diagnosis was a shock, but a blessing as now my niece knows better how to take care of Payton. In November there was a Prader Willi Convention here in Florida.  Joanne contacted me to see if I could get together a group of people that might like to help out at the conference, with the PWS kids, while their parents attend meetings.  I was so excited to be a part of this and talked to women at church and got a small group that were able to come.  From one of them, a whole school group decided to come as well.  The mormon missionaries in the area were contacted as well, and 40 of them came to volunteer one of the days.  Kinsey and I went for two days to help with these kids, and it was one of the most rewarding experiences I have had.  It was wonderful to be with my nephew for those two days.  My friend Stefanie and I were able to help with his group for the first day, and Kinsey and I helped the second day. I grew very very attached to these kids in his group (ages 10-17) and had such special moments with them. I love seeing my niece and her husband (Payton's mom), and my sister and her husband (they were all attending the conference). 

There was a "SURVIVOR" theme to the convention. These kids face very serious issues in their lives and they require special medications and special care and supervision, just to safeguard their lives.  They are very concerned about schedules, and what is happening next, and why...and WHEN.  Biggest question of the day?  "WHEN IS LUNCH".  We helped with many fun activities and crafts for the kids and grew to know them and love them. They are so sweet and so loving. It was AMAZING to have all of those missionaries there.  What a great sight to see them connecting with the kids. What a neat sight to see the conference workers so impressed with them.  19 and 20 year old boys that are polite and don't use bad language, and love kids?  They couldn't believe it.  It was wonderful to be a part of this.  Just wish I had brought my camera to capture the essence of my experience there.  Luckily a friend of mine took a few of these pics for me. 

               Me and Kinsey with some of our wonderful friends that came to help at the convention. Savannah Sardon, Megan Wallace, Stefanie Dowdy, Lorraine Roe, and Rachel Mann (not pictured)