I’ve been blessed with having a “chance” to view the world and life from a different angle. Having a child with a rare disorder comes with a whole new world, one you can’t even imagine if you haven’t been there. Everything is a battle, from getting the right doctors to listen to you, and getting the appropriate therapies to help your child excel to making sure they have the best opportunities to be the best that they can be. This world is not adapted for our kids, and sometimes it seems next to impossible to adapt them to this world. But beyond all of this, it is truly rewarding! Chance has taught me to cherish the small things, to appreciate that the rainbows only come after the rain, to stop and smell the roses and feel the wind in your face. He has changed me tremendously as a person and for that I am forever grateful.
I began trying to get Chance a wish granted several years ago when he was diagnosed with ROHHAD (rapid-onset obesity (RO) with hypothalamic dysregulation (H), hypoventilation (H), and autonomic dysregulation (AD). It is a rare, life-threatening syndrome that affects the autonomic nervous system (which controls involuntary actions like breathing and your heartbeat and the endocrine system.) He had already been diagnosed with several rare neurological disorders, hormone deficiencies and a visual impairment along with cerebral palsy and autism. Most coming at birth or within the first few years of his life. He was not expected to live past the first 24 hours much less graduate from the NICU, start school, talk, laugh etc. So, every second I have with him is precious! I tried and tried to get a wish granted for him but for certain wish organizations he just wasn’t “critical” enough for their guidelines. I wanted Chance to enjoy his wish and be able to participate without feeling ill. So, I reached out to Kids Wish Network and applied. The process was quick! Chance had his interview and within a few weeks we got the call that his wish had been granted and that he would be touring the set of Family Guy and meeting Seth MacFarlane in person for lunch! He was ecstatic!! We all were!! Chance is a lifelong fan of Family Guy, so this was an incredible opportunity for him!
Although flying with a special needs child in a wheelchair was anything but comfortable for him, we made it to LA. The hotel staff greeted us in the lobby and were so accommodating! Chance even received a personalized card that the staff had personally signed for him! Tuesday morning, we were off to the studio and had no idea what they had in store for him! On the door of the studio was a personalized Family Guy sign welcoming Chance! Everyone in the studio was so welcoming and friendly to Chance. They made us feel like “family”! Expressing their gratitude of sharing Chance with them at every opportunity! He met the writers, his favorite director, the color artists, he got to preview an upcoming scene for the new season, record lines of “Chris” and personally speak with the staff at the studio. Everyone spent so much time listening to him and answering his questions! He was then presented with so many gifts I cannot name them all!! We then prepared for Chance’s most exciting part of the day, meeting Mr. MacFarlane!! We arrived at his office and there were red balloons (Chance’s favorite color!) all over the office with “Welcome Chance!” personally written on them! And when Mr. MacFarlane walked around the corner, Chance’s eyes lit up and he squealed with delight! “Seth MacFarlane!!!” From the time they met it was like they were old friends. Mr. MacFarlane didn’t act uncomfortable around Chance as so many people do. It was a casual encounter where he sketched Chance’s favorite characters, spoke in the different character voices and even made phone calls to Seth Green and Mila Kunis so Chance could personally speak to them! He even had Chance’s favorite meal, Chicken McNuggets!! Mr. MacFarlane, in conversation, asked Chance about his flight out to LA. And Chance being Chance, he was very forthcoming with his displeasure with the commercial airline industry and how people with disabilities and in wheelchairs are treated. With Chance exhausted, we said our goodbyes and headed back to the hotel to relax before a very exhausting and stressful day we had flying home the next day. Within an hour of being at the hotel, I received a phone call. Mr. MacFarlane wanted to fly us home in his PRIVATE JET! We were ecstatic at the genuine concern and generosity Mr. MacFarlane had for Chance! We flew into Cape Girardeau Regional Airport and were greeted by the Cape Girardeau Fire Department and Police Department. They helped Chance get off the plane and then presented him with a tote full of “swag”!! He was able to check out the firetruck and police cruiser and ask questions before they left!
This wish was an amazing opportunity for Chance, but also for me and his brother Spencer who went along to help me with Chance. To be able to see him enjoy things and be excited, and forget about the day to day medical stuff he deals with was beyond anything I can explain in words. When you have a child with an incurable disorder that is life threatening, you cherish every single thing that makes their life happy and enjoyable. Because of Kids Wish Network, Family Guy Studios, Seth MacFarlane and all of his staff we were able to see the light in Chance’s eyes and the smile on his face as he was able to enjoy just being a teenager!
I wish I could name everyone that made this so special for Chance, but I am sure I would leave someone out unknowingly. So I will say, THANK YOU to EVERYONE who had a part in this!
A special thanks goes out to our wish representative Tambra for making our trip so much more memorable! She and Chance had a special connection from the start! Thank you Tambra for being so amazing to Chance and my family! We will never forget you! (Look out for the video calls from Chance lol)