Giving her only son Michael the love and specialized care he needs always comes first for single mom Monique Whitaker. Michael recently turned 10 and lives with a very rare genetic disorder called Hunter syndrome along with other medical conditions.
“Hunter syndrome is when someone’s missing an enzyme and the body can’t break down cells, so there’s no way for them to be released. Normally this affects airway issues. He also has chronic asthma, scoliosis and glaucoma in both eyes and needs to wear lifts in his shoes,” Whitaker shared.
A hard-working mom and devoted caregiver
Whitaker works as a family and community liaison at Maximo Elementary School and manages her son’s everyday care. Her goal is to make him comfortable and happy.
“He has a chest nebulizer, sleeps with a BiPAP machine at night and has weekly medication I give him. I choose to do it because he was getting so many infections in the hospital and I had them remove his port. Since I’ve been doing his care at home, he hasn’t had those issues. Sometimes it’s hard having to do everything on my own, but I enjoy doing it,” she shared.
Turning to Help
Looking for support and relief, Whitaker had a conversation with her sister who at that time worked at Empath Health. She shared information on a program offering respite care called Partners in Care – Together for Kids (PIC-TFK). This program in conjunction with the state and Children’s Medical Services can be provided to children who meet certain criteria so that their families can get out to tend to their own needs. Empath Health offers this service to children through our pediatric program. These palliative care support services help to improve comfort and quality of life for children and families.
“My sister mentioned her job and I went from there. I followed up with the lady she told me about, and in about a month we were approved for respite care. This service eliminated me from having to find somebody in the family who could watch Michael,” she said.
Life-Changing Care and Support
Our services for PIC-TFK children and families may include nursing and counseling visits quarterly and as needed, respite whenever families want and holiday baskets and gifts donated from our community. The Whitakers have benefited greatly from our care and support over the past several years.
“I’ve enjoyed the nurses we’ve had. It’s good when they’ve gotten to know Michael because they’ve had that continuous relationship. He loved nurses Jeff and Yolanda. Nurse Renee was one of his first nurses and since she has moved, we still keep in touch with her. If I need to attend a leadership meeting or want to go to the gym or get a massage, I can have that time to do those things for me because I have PIC-TFK. The relationship we have with Geeta (the care team assistant) is really good. I like her personality and that she’s in tune. It doesn’t matter what time I leave a message, she gets right back to me and I like that.”
We’ve also been there for the family in their times of need through support from the Suncoast Hospice Foundation and community. She added, “They’ve given us baskets at Thanksgiving, toys at Christmas, food and toiletries. This past year, they helped me get car repairs. It’s a blessing for my family when I really needed it. I always make sure to send thank you cards with pictures of Michael.”
Talking about Services
Whitaker believes in raising awareness about our services. “I’ve shared information about respite care and other Empath Health services with some families whose kids receive medical care and at my church. We’ve had a couple of church members sign up. I’m also in the process of creating a nonprofit organization that helps single parents with special needs children. I try to be a resource in my community,” she said.
Honored to Care: Patient Week
In celebration of National Patient Recognition Week, we thank all the patients and families we’re privileged to serve. Do you have a story of care and support? Please share in the comments below.