Meet Kay Bracero

Kay Bracero and his son, Noah, 13, make quite a team.  
 
Noah was diagnosed with cerebral palsy at birth. Then at age 5, he received a diagnosis of Duchenne muscular dystrophy (DMD). Kay, 43, is both Noah’s father and sole family caregiver, with occasional assistance from Kay’s mom. 
 
Noah — whom Kay describes as “high-functioning, outgoing and a jokester” — uses a manual wheelchair for mobility and relies on his dad for all his physical care. Kay rises at 5 a.m. each day to help Noah dress and get ready for school, and then after school, Noah receives several forms of therapy at home — occupational, physical and speech.
 
When Noah is at school, Kay looks for employment. He worked for U.S. Customs Compliance for over 15 years but was laid off more than 12 months ago. Kay says he’s learning to take better care of himself and to seek stress relief, noting that he especially enjoys interior design and carpentry.
 
“I give Noah maximum assistance because he has significant challenges,” Kay says. “I help him with everything.” But his caregiving role doesn’t stop there. Kay is an avid advocate for all of Noah’s needs — medical, educational, social, financial and more. “Advocacy is never-ending on behalf of your loved one,” he says. 

Kay has found several programs that give Noah opportunities for recreation, physical activity and music. Father and son also enjoy attending baseball games and museums together. 
 
Kay says he sometimes finds it difficult to “accept that some things — like my son’s diagnosis — are beyond my control.” But Noah’s challenges also have helped Kay find “courage I didn’t know I had. I’ve learned I will make mistakes, but I’ll never fail him, as I’ll never give up on him.”
 
Kay notes, “I don’t know what the future holds, and I know Duchenne is progressive. I have to prepare for the next phase.” He recommends that parents who are beginning to take on the tasks of caregiving “take lots of notes and persevere. Seek advice from your local MDA office, and ask for and accept help from those who are sincere.” 
 
Parents of children with muscle diseases may find that caregiving changes their lives in profound ways, Kay says. Caring for his son “has changed me from an easygoing person to a proactive person.”