Meet Seth – Indiana

Meet Seth – Needham IN – Age 10 

 Seth’s parents knew something wasn’t right as he struggled to eat and gain weight after he was born. About a year later, after dozens of doctor’s visits, Seth was diagnosed with a Chromosome 2q deletion, the third reported case of this specific deletion. Because of the unknown nature of his diagnosis, Seth’s treatment plan addresses his needs as additional symptoms start popping up.  

 Even with all of these obstacles, Seth still manages to see the positives in every situation. When he has a good day, he can move around like a normal kid and enjoys playing dinosaurs, riding his bike, and playing basketball with his older brother. When he has a rough day and can’t move very well, he loves watching the Jurassic World and Cars movies! 

 Seth found out about A Kid Again after being adopted by the Butler Basketball Team through the Friends of Jaclyn Foundation. There, Seth and his parents connected with an A Kid Again Board Member and enrolled soon after! So far, Seth and his two older siblings have enjoyed Shopping with the Pacers, the Microsoft Adventure, Lark Ranch, Haunted Runway, and Adventure in a Box. 


 Seth’s mom, Jennifer, says “A Kid Again gives us a chance to all get out of the house as a family, as a whole, and take a break from the hectic lifestyle.”   She wants others to know that raising a child with an illness/special needs can be one of the most rewarding, but also one of the hardest, things you’ll ever face in life.   

Illness doesn’t affect just the child with a condition. Jennifer says one thing that helps their family is to always remember to set aside time for the siblings to ensure they aren’t forgotten.  It can be as simple as staying up late watching a movie or taking a bike ride, but it’s important to ensure they also have special one-on-one time. 

 Seth is currently immunodeficient, and largely homebound because of that, fed through a central line, has muscle myopathy that sometimes requires a wheelchair, and is in liver failure.  Jennifer says, “The one thing that keeps me going is the constant smile on Seth’s face. He never says he gives up and is the most encouraging and fun kid to be around!”  When times are tough, her motto is “Let go and let God”. 

October 2020

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