NORTH SARASOTA, Fla. — Speak Now for Kids Family Advocacy Week is being held June 13-18. It's an opportunity for families nationwide to share their children's experiences with different health issues with the public and elected officials to show the importance of medical resources for young people.
What You Need To Know
- June 13-18 is Speak Now for Kids Family Advocacy Week
- North Sarasota Mom Katrina Michel says she plans to share her daughter, Liliana's, experience with CHARGE syndrome
- Michel said she wants to stress to policy makers the importance of Medicaid for families like hers
- Speak Now for Kids is an online advocacy network that raises awareness of children's and families' experiences in the health care system
Advocacy is nothing new for Katrina Michel.
"I found myself needing so many resources along the way. Then I kind of saw the ones that really helped me, and I was like, 'Thank God we have these.' Then I realized there was a lot missing," said Michel.
She was looking for resources for her daughter, Liliana, who has a rare genetic disorder known as CHARGE syndrome. At just five years old, Liliana has been under anesthesia 19 times for 36 different procedures. Some of the procedures were combined to reduce the number of times she'd need anesthesia. She currently sees 17 specialists, but Michel said they've probably worked with a total of 40. According to the CHARGE Syndrome Foundation, the condition can cause multiple complex medical and physical issues. Liliana is deaf and visually impaired. Among her long list of diagnosed conditions are sleep disorders, feeding difficulties, and heart problems.
"In terms of her being deaf and whatnot, there's really no groups for kids," Michel said. "You find something as a resource, then you realize it lost its funding, so then it doesn't exist."
As Michel kept looking, she got involved with the resources she did find. She's a state parent liaison for the CHARGE Syndrome Foundation. She's a member of the Johns Hopkins All Children's Hospital Family Advisory Council and parent representative within the ambulatory surgery and safety coaches work groups. She's also co-facilitator of the National Family Association for Deaf-Blind Family to Family Community Project. The list goes on.
"You're so thankful for the things that are there that you just want to share it to the next family. So, I kind of found my heart within that of digging for whatever I could find to apply that knowledge to myself, but then to help out the next family, as well."
Next up for Michel and Liliana — taking part in advocacy week. Speak Now for Kids is an advocacy network meant to raise awareness about the challenges children and families face navigating the health care system. Michel said the main point she hopes to get across is how important Medicaid is for kids like Liliana.
Meet Lilliana Michel. For her whole five years, this tough little girl has been battling CHARGE syndrome, a rare genetic disorder. Her mom, Katrina, is sharing their story as part of @speaknowforkids Advocacy Week, taking place June 13-18. @BN9 pic.twitter.com/GLdfg4jSal— Sarah Blazonis (@SarahBlazonis) June 11, 2021
"We've had countless blood work, X-Rays, ultrasounds. We've traveled in and out of state for hospital care you just need. There's always something underlying that comes up," said Michel. "There's just so much life-saving or supportive things that she needs. It's just, it's frightening to think, you know what I mean? It would be unattainable."
Children’s Hospital Association President Amy Knight said in a statement, “Family Advocacy Week is a special event for children and youth who have been patients in our nation’s children’s hospitals. It’s an opportunity for the families to meet with members of Congress, tell their personal stories and advocate for improving health care for kids. Families like the Michel’s provide an important voice for all children who may need a children’s hospital as they grow. Some children like Liliana may rely heavily on pediatric specialty care, and other may just need episodic care for a broken bone or severe virus. Unfortunately, we are also seeing more kids needing children’s hospitals for mental health issues too. Numbers of advocates will share their own mental health stories to support better policy making.”
According to Speak Now for Kids, 36 million children rely on Medicaid every year for health services. In addition to coverage, its web site lists access to care as another important issue for families.