Philadelphia 5-year-old has been a heart patient since birth, survived a cardiac arrest at age 3
By Jason Didner, leader of kid-friendly rock band Jason Didner and the Jungle Gym Jam
For the month of June, I’m sharing proceeds from album sales with young Xavier and family because I was so moved by the extraordinary lengths his family goes to give him the happiest, healthiest childhood he can under these hard circumstances.
I interviewed Jackie because I wanted to get to know Xavier the child, someone who is more than merely an example of a medical condition. Jackie offered some real glimpses into Xavier’s personality and spirit. I hope you develop these wonderful layers of understanding of this boy as I have through this process.
Q: What are Xavier’s favorite things to do?
A: X loves music, watching movies, reading books and spending time outside
Q: What are Xavier’s favorite foods?
A: Unfortunately, since his arrest he has been fed via a feeding tube in his stomach. Prior to the [cardiac] arrest he loved cheese, apples and his absolute favorite was salt and vinegar chips!
Q: You’ve mentioned that when he’s having a run of good health, his personality and attitude come out. Can you tell us a story or two about this?
A: When he is feeling well he is silly. He will laugh and make silly faces. He engages a lot with his nurses…even fluttering his eyes and flirting with them. He laughs out loud, big belly laughs.
Q: You’ve talked a little about the affection between Xavier and his little sister Elliott. Do you have a story you’d like to share about their relationship?
A: Elliott loves Xavier very much. I don’t think she has much of a memory of him prior to his arrest. She was only 9 months old but he absolutely knows her. She loves him very much. She will walk right up to him while he is in his wheelchair and kiss his hand or put her hand on his foot. When he is home she likes to sit with him, hold his hand and watch TV with him. He always gets the biggest smile on his face when he sees her. They have a special bond.
Q: I understand Xavier’s dad is a musician. Music also offers extraordinary ways of opening up a person’s emotion, memories and connectedness to the world around him. How does Xavier respond to music?
A: He loves music. He participates in music therapy classes at CHOP. He enjoys listening to music during therapy and we even play him music to sleep.
Q: What have been the most important avenues for Xavier to express himself/for you to get to know his developing personality?
A: We see a lot of his personality come out during therapy. When the therapist gets him on the mat and up so we can play with him it’s easier for him to interact. Pet therapy has been good for him as well. He likes to see the dogs. Xavier was basically a normal 3 year old before he had his cardiac arrest so he still enjoys the things he liked before…we just have to find new ways for him to participate and interact with us.
Thanks for taking the time to answer these questions; I hope they help the We Love Xavier’s Heart group members and the general public get a greater sense of this remarkably resilient child and get comfortable connecting with you & your family about Xavier and ways they can help.
Here’s to your family’s health!
This is the #SummerOfSharing. Each month I’m helping a cause I believe in, with your help!