PWS Awareness Month-Day 26

Hey Everyone,

So after reading 25 days worth of posts you might be thinking- How can I help?  Well then this is the post for you.  Below are just a few ways that you can help our family:

  1. Call, text, email, facebook message: It is always appreciated to hear from friends just asking how we are doing- both about Kemett and just about ourselves.  Sometimes we may not realize we haven’t reached out in a while.  It is a wonderful feeling to catch up with a friend, even if its a few minutes.
  2. Be patient: Our lives are crazy busy with school, therapy, homework from therapy, clinical trials, and two working parents.  We try the best we can to get together for playdates, but it may seem like months before we can make it work.  We want to see you, for Kemett to have friends and live a normal life.  It’s just hard sometimes to get out of the house or we are exhausted and that will be our only time to just stay home and rest.  We know it’s hard to come over to us, but we really do appreciate when you can make it to our house.  Just be patient with us as we schedule and reschedule these get-togethers.
  3. Ask Questions: I hope what you have figured out from this month is that Andrew and I are not afraid of questions about Kemett.  We’d rather you ask a question!
  4. Give us a heads up:  If you are going to have a party, just let us know the food situation and timing of things.  We just would hate to show up and be thrown off (although we are good at being flexible when needed).
  5. Be inclusive:  When possible, we appreciate people making an effort to be inclusive of Kemett.  Remember it’s not his fault that he has PWS or food allergies.  It’s nice to feel included on meals/treats.  Please ask us, if you have questions.  On the same hand, please let us know how we can be inclusive of your family.  It’s not all about us!
  6. Share blog posts and facebook posts: The only way we can educate is by people sharing information on PWS, research, your point of view, or our family.
  7. Walk with us: This could be in person or virtually!  Our One SMALL Step walk will be on September 30th, and we hope that you will join us to support Kemett and his friends!
  8. Donate: Your time, services, in kind items or financially to our One Small Step Walk!
  9. Never feed Kemett– We will bring food for Kemett or know what you have before we come.  Since Kemett’s diet is so strict, we ask that you never offer Kemett food outside of what we have for him and his feeding times.
  10. Please follow our “rules”– These were in another post, but we would be happy to resend them if you just ask!

Thank you for your love and support!

Love,

The Demands

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