My Meghan's Project

Sunshine is the enemy for my daughter, her day starts at sunset.  She has EPP, which is short for Erythropoietic Protoporphyria.  This is a rare disease that causes abnormal proteins to accumulate in her blood and react to sun or UV exposure.

Our goal is to raise $25,000.00 to build an arena so Meghan has a place to play anytime during the day.  She could ride her horse, play volleyball, ride her bike... or any number of things without the worry of blisters and burns on exposed skin. The above photo shows her normal self followed by images of what the sun does to her.  This is a very painful disease and can be quite disfiguring.  It takes several days to erupt and weeks to recover from sun exposure events.  It is extremely painful throughout the entire episode and there is no way to comfort her.  There is no cure for EPP.

Please help us to raise the funds necessary to meet our goal.  We are planning a basic building, only 3 sides as it attaches to an existing barn.  No windows or floor are in the plans as it is an extra... she really needs shelter from the sun.  It is hard to provide things for her to do and also be fair to our other two children who can go out in the sun.  We can't do most things that alot of folks take for granted... go to the beach, sit in the stands for soccer or football, go to an amusement park.  Please help us to provide a childhood for Meghan so she doesn't look back and feel she didn't have one.

We are almost there!  We have raised $20,000.00 of the $25,000.00 and are ready to step out on faith and start our project.  The only problem is, where we want to build is VERY soggy (marshy might be a better word).  As soon as it dries up a little, we want to build.

Summer is upon us and we are already starting to have issues with the sun.  My heart goes out to Meghan as she is forced to play in the shadows while everyone else is outside enjoying themselves.  Please pray for dry weather and the rest of the funds so her refuge becomes reality.  Thank you to everyone who has helped in our endeaver, especially, Johnny Burke and his Children's Foundation and Blondie.  And Mr. Maier, what a gift!  God bless you all.

A very special thank you to Claire Patterson for planning a rummage sale May 14 and 15th to help Meghan's Project. Thank you to our church family at Freeland UMC for all your  support.

Donations can be made in Meghan's name to :                                                                     Johnny Burke Children's             Foundation                               c/o 96 WHNN                          1740 Champagne Dr. N             Saginaw, MI 48604

Meghan spends a lot of her time standing in the shadows.  Not much of a life for a nine year old.