Madison is a wise 12-year-old who has had to sit on the sidelines of life due to her complex laundry list of medical conditions that affect her digestive system and connective tissue: GERD, motility dysfunction, EDS and brittle bone disease.
These diagnoses cause Madison chronic pain, and some days her pain is a two out of 10, while on other days, her pain can be a 10. Plus, daily actions such as stepping off a curb or bumping her knee can cause her bones to break. Thus far, she's broken 13. Despite her challenges, however, Madison navigates life on her terms.
“When something hurts, I stretch or bend it,” Madison says. “Then, I think about everything I am going to do that day. I consider each activity and ask myself, ‘Is it worth missing based on how bad I am hurting?' If my pain is a five, it's not worth it to miss school or a party.”
Additionally, Madison says that on the days she stays home, she rests. Although she knows she's missing out, she finds other things to do that make her happy, like journaling, beading and thinking about what she's looking forward to the next day or next week.
“Madison's journey has been long filled with several twists and turns,” says Madison's mom, Tamika. “There are days when things are better than others. She refers to Phoenix Children's as her second home. This is because we have spent such a large portion of her life there.”
Tamika adds that being a parent of a chronically ill child has transformed her and her family. She says some days she struggles, but she sees how brave and resilient Madison is through it all. “She's such an amazing girl! Witnessing Madison's strength and resilience makes her my forever hero,” says Tamika.
Because she spends so much time at Phoenix Children's, Madison and her family have found solace in Child Life, a philanthropically-funded program that helps patients deal with their diagnoses through the power of play. It also provides Madison's family with the tools and resources to cope with her medical challenges.
Madison's Interests
Arts & Crafts
Cheer
Music
Singing
- “The quality of care here is amazing. Phoenix Children's makes it personable and accessible. They email, call and text. We've had the same team since Madison was 3. They are our advocates. They are present for Madison like she is the one and only.”TamikaMadison's mom
Phoenix Children’s Patient Ambassadors are a valiant bunch—they’ve shown immense strength amidst great setbacks. They’re also athletes, intellectuals, artists and the best siblings.
Even though their lives are full of medical appointments, they want to help other patients. Each ambassador has created a fundraising page to support Phoenix Children’s. Consider donating to Madison's fund today.
