Abbie Grace (15-years-old) began her journey with multiple diagnoses at six months old. She has hereditary alpha tryptasemia syndrome (HATS), Marfan’s Syndrome, gastroporisis, gastrointestinal pseudo-obstruction, Spina Bifida, and dysautonomia.
Abbie Grace struggles with constant fatigue, nausea, muscle soreness, and pain. She said, “Even if I sleep 12 hours, it is not enough sleep.” Her disease can seem invisible to others, and yet, so much is happening on the inside. Nothing ever seems to make the fatigue and pain go away. She works hard to ignore it so that she can keep joyful. This kid has endured a lot, for example, she has had infection go septic and has had a blood clot in her heart.
Abbie Grace said that she would want other people to know that “there is never an end, but I wouldn’t want them to feel sorry for me. “ She commented that her care is very tedious, hard and demanding. It takes a lot of attention. She also feels that you must find your passions so that you can use them to divert your attention from the hardship of the chronic illness. Finding your joy is important.
Passion and fun is a must when you are dealing with chronic illness. Abbie Grace really loves Camp Boggy Creek (so bummed it has not been live due to the pandemic), Disney, reading, puzzles, shopping, fashion, and dancing. She dances for herself. It is definitely her greatest passion. Breathing is hard for her when she dances and she has to take breaks. Haley, her “dance BFF” is always there to support her. With her BFF by her side, dancing is even better. Abbie Grace said, “Dancing can be hard because it is like a show you have to put on, but I am really putting on the show for myself to cover up what is really going on. It is like a distraction.” She later went on to say, “I don’t need to be the best. I just need to be happy doing it and not be self conscious about what I am doing.” Sometimes she has to learn dances by watching and resting and then later getting up to do the dance. She may even need to lie down and watch, but she learns the moves and steps and does her best. Abbie Grace's passion is most definitely dance and life is her song.
While dealing with chronic illness is quite difficult, a lot of good has also come from the journey. Abbie Grace shared, “I think it has made up most of my personality. You can’t take things for granted. You have to appreciate everything. Tomorrow’s never guaranteed; you always live for today. I know it is very cliché, but it is true…I don’t always tell people that I have a chronic illness, but it definitely makes up who I am.”
Her best friend, Cammy, also happens to have HATS. When they met, they definitely became “two peas in a pod”. They adore their time together, can relate to each other and watch out for one other. Abbie Grace’s mom commented that they are blessed to have each other. She also feels like Cammy is her second daughter. In fact, the girls are so close that Cammy was actually present for the interview for this story. Cammy said, “ Abbie Grace has this inherent drive to make people better. If she is able to help, she would do it because she would wish that someone would do that for her.”
Since diagnosis, Cammy and her family moved away but the girls are still the best of friends. In fact, Abbie Grace surprised Cammy with a room make over and also brought her to Disney. The girls even have matching phone cases. Abbie Grace is always thinking of others, but especially her best friend Cammy.
Abbie Grace has some advice for other kids dealing with chronic illness, “Enjoy the moments. It’s a cycle. Enjoy the recovery and peacefulness before you have the symptoms again. I think that it is very important to keep the passions in your life. Find a way to keep them in your life.”
She has always loved to volunteer. She has done a lot for Make-A-Wish. She has visited a ton of schools to campaign for the “Macy’s Make-A-Wish’s letters to Santa” campaign. She has also volunteered at their golf tournaments. She loved helping sell raffle tickets to the golfers. She also got to drop golf balls down from a helicopter onto the golfing range. In addition, she has supported Make-A-Wish by speaking to the “Refrigerated Foods of Florida”, helping at fishing tournaments, and speaking at other events. She gives back to Make-A-Wish because she wants other kids to experience the magic that she did.
Here love for helping others is one of her passions. She enjoys writing “Letters of Hope” for kids with chronic illness and in hospital/homebound school. She loves helping service organizations that help kids. She also believes firmly in spreading kindness to her friends. She adores seeing them happy. She said, “I am always making sure my friends are okay and doing things for them…I want to make sure they are always happy, healthy, and good.” It is because of this kind spirit that Abbie Grace possesses that her infusion room nurse nominated her for Purple Playas Chronically Caring Kids. Abbie Grace shared that she learned the importance of spreading kindness from an older girl that took her under her wing when she was younger. She remembers how she felt that that this older girl took notice of her, asked her to sit with her at school events, truly took an interest in her, and even got her a “best friends heart necklace” (the heart kind that you break in half and each wears close to their hearts). Abbie Grace was so touched by this because this girl proudly wore that necklace even when Abbie Grace couldn’t attend school.
We love that kind acts are so impactful that they can inspire others to passionately spread them to the point they becomes contagious. That is one contagion we can celebrate!
VIDEO STORY ABOUT ABBIE GRACE: Click here
Do you know an amazing kid with chronic illness who gives back to the community? You can nominate them for our Chronically Caring Kids monthly stories. Just email us at firstname.lastname@example.org