Gwen is a 12 year old girl, diagnosed with Glycogen Storage Disorder,  a rare metabolic disorder where the body is not able to properly store or break down glycogen, a form of sugar. It was around her third birthday when she began to show signs of developmental delays.   It was also around that time she developed pneumonia, becoming sick enough to require emergency room care. While Gwen was there, a routine CBC blood test showed her blood glucose level was dangerously low, being extremely ketotic. Her parents realized that their little girl was dealing with something serious. The journey to resolve the mystery took them to many specialists, including the physicians at The Mayo Clinic, looking for more answers and possible solutions.  Despite many frustrating days and unanswered questions, they kept pushing on.  

It was a random tv show that gave them a bit of direction.  The symptoms described were very similar to that of Gwen’s.  Through the show, they were able to connect with a physician who might be able to help.  It was then confirmed that Gwen has Glycogen Storage Disorder.  By the age of 4, and multiple trips to the Cleveland Clinic for care and monitoring, she was given a treatment protocol.  This routine would help her maintain her energy and protect her metabolic system.  Despite all the medical visits, treatments, medicines, and limited ability for physical activity, Gwen takes this all in stride.  She has overcome so many challenges in her young  life.  Ironically, Gwen now helps her younger sister to cope with her difficult days, since she also has the same diagnosis.  

It was Gwen’s mom who reached out to A Special Wish - Chicago, in hopes of providing Gwen with a special trip to celebrate her strength and courage.  Despite her medical limitations, Gwen loves nature and adventure.  Her requested wish was to go to Florida to enjoy a family trip to Disney and kayaking.  Her special  wish team began to design an experience that was to incorporate her favorite things.  The final destination was to be Give Kids The World, with trips to the Walt Disney World parks for the family.  Their last stop was a kayak adventure at the  Florida Manatee and Dolphin Kayaking Tour to enjoy the natural surroundings in the Sunshine State.  A Special Wish - Chicago was honored to grant this travel wish to Gwen and her family, giving them all a time to relax and enjoy their time together.  

HEARTFELT THANKS

“I am sorry it has taken us so long to get this typed and compiled, but our trip and our experience was nothing short of amazing! It was a total dream to be able to experience this for and with Gwen. Give Kids The World is truly a magical place, and somewhere that as a family with complex medical needs, we were cared for, looked after and felt seen. That is one of the biggest take-aways we had from this trip; we were seen, acknowledged and treated like she (and our family) mattered.

The Village was wonderful from check in to check out. Volunteers there did so much and the only hurdle was for us to "get over ourselves" and let them help. Someone is always offering a ride to the condo in the golf cart, help carrying dinner or meal trays etc. The kids loved swimming in January, fishing and seeing alligators in the pond, ice cream at any time of day, and independently ordering pizza when they pleased!

Disney parks were awesome! We really had a perfect amount of time to not feel rushed, and to go to what we wanted when we wanted. The only limits we had were how long our legs would last walking!

Universal was unparalleled when it comes to Wish Family treatment. They literally escort you to the front of EVERY ride and make sure any wait time is minimal if at all.

One of the best parts and sometimes something people forget they have is the photo passes. GKTW uses Smug Mug and takes photos at their events, and Universal and Disney both have photo passes that are given to families who stay at GKTW for professional photographers throughout the parks, and on each ride. That alone was so amazing because so often I (mom) am behind the camera, or we forget to take pictures. These are invaluable parts of the trip and we love having these memories.

Finally when we do have to leave the Village, we are given a "Wish Passport" that is valid at many attractions throughout the US ie. Ripleys in Gatlinburg, Noah's Ark in Wisconsin Dells, Six Flags etc. that are good for a year.

We are forever grateful to A Special Wish for all of the work, and kindness and love that went into allowing us this opportunity for Gwen, and for the entire family.

Thank you again, and for the future, I would LOVE to work with your team to help volunteer in any capacity!

Mollie Minard”

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