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Destiny, Glutaric Acidemia, Type 1, 20 years old


Glutaric Acidemia, Type 1, 20 years old

Destiny is a bright and cheerful 20-year-old. She is our middle child of three with an older brother and younger sister who both still antagonize her like any normal sibling (she gives it right back though). But her siblings are also amazing at understanding and helping with Destiny’s needs and knowing sometimes their dad and I must split time between them all when Destiny is at appointments or hospital stays. Destiny has a great sense of humor and a smile that lights up the room. She loves adventure and going on trips. Here is a little bit of her story. Destiny was diagnosed at six months with failure to thrive and during that hospital stay they diagnosed her with GA1. At age 3 she had a cold that caused a metabolic crisis and she had seizures. The seizures left her no longer able to walk, crawl, talk, or eat. But the seizures did not take away her intelligence, her love of adventure, her humor, or her beautiful smile. Destiny has been through many surgeries for her scoliosis, hips, legs, g-tube, and broken bones due to low bone density. Through it all she has kept that beautiful smile (even when she lost all her hair from multiple surgeries in a couple weeks’ time). When Destiny was around 10 years old, we were listening to the radio on the way to one of her doctor appointments. A guest speaker was talking about the Adventures for Wish Kids (now A Kid Again) Christmas Party that would be coming up soon. They talked about their mission of helping make kids feel like a kid again. This was something I knew would be great for Destiny and the rest of our family, so I looked into it as soon as I got home and signed her up. Destiny is aging out of A Kid Again this summer, but it has helped put countless room-brightening smiles on Destiny’s face, as well as smiles on all our faces. Even the faces of foster placements we hosted at the times. A Kid Again have taken us on trips to Magic Mountain, the Columbus Zoo, Kings Island, Charles Penzone, Blue Jackets hockey games, Crew soccer games, Ohio State games, Scene 75, Zoombezi Bay, Holiday Parties and many, many others. They cover tickets to the events, as well as parking and food and usually add in a little surprise too. The Adventures have helped Destiny meet other kids who look just like her (in a wheelchair) and for us to realize we’re not alone. A Kid Again has given us so much joy and happiness and never asked anything in return (though we love to volunteer for them when we are able). A Kid Again has grown considerably since when we first joined and now are throughout Ohio and in many states. We can’t thank them enough. If there is a chance that your child may qualify, please check into http://www.Akidagain.org. You’ll be glad you did.



From Summer/Fall 2022 Newsletter

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