Meet Emma: 2020 Family Advocacy Week Champion
Emma is participating in Speak Now for Kids Family Advocacy Week from August 10-14, 2020. Through this special event, Emma and her family will share information about her health journey, Joe DiMaggio Children Hospital’s role in providing Emma with necessary health care services, and why the public and our elected officials must invest in the future of kids like Emma.
Rose first noticed abnormalities in her daughter’s knees when Emma started walking around 15 months old.
“She seemed fine, but then I started noticing her knees were getting too close together as she walked, then I started noticing her chest was not positioned correctly and her ribs didn’t feel right,” says Rose.
After two years struggling to find a diagnosis, Emma’s pediatrician recommended they go to Joe DiMaggio Children’s Hospital (JDCH) in Hollywood, Florida. The doctor quickly diagnosed her with Morquio syndrome, a rare genetic condition that affects a child's bones and spine, organs, and physical abilities.
“I knew Emma was in good hands,” says Rose. “As a single mother, it is devastating to have a sick child and to not know what is wrong.”
Her treatment plan for the last four years includes a weekly visit to JDCH for a Vimizin infusion and visits with eight different specialists.
“It’s our home away from home,” says Rose. “She loves seeing her nurses, doctors, child life specialists, and Lotsy Dotsy, the clown. She plays with them and smiles.”
Today Emma is 7 and stable. Emma and her mom take it day by day. Emma is open-minded and brave, according to her mother. She loves arts and crafts, gamed, and dancing.
“Once I finally made it to JDCH, we had a plan, and I was able to see her improve,” says Rose. “When we got to JDCH we felt supported. I felt that they treated my daughter like she was their daughter.”