Last updated on May 13th, 2019 at 02:33 pm
When Faith Madding was born in 2002, she was about 13 weeks premature and weighed just 1 pound, 11 ounces. When she was five weeks old, Faith was diagnosed with a rare, genetic syndrome called Peters Plus, from which she has suffered vision problems, shortened limbs, urinary tract abnormalities, a swollen kidney, a spinal abnormality, corneal abnormality, hearing impairment and other problems. She is legally blind and can barely hear.
Faith’s father, Chris Madding, who built his career as a business development professional, needed flexibility in his day job to handle Faith’s staggering health care needs.
So, Madding left his position at Brown Deer-based Northwoods Software Development Inc. in 2003 and founded Madding Marketing Group in Saukville last year to continue his career, do what he does best and be close to home in case of an emergency with Faith.
"I took the time to assess what I wanted to do," Madding said. "I figured out my game plan, a timeline and factored in money and my daughter."
Madding Marketing Group is a marketing and communications firm that is built from and focused on relationships and alliances of Wisconsin area companies, Madding said.
"I like to bring local resources to the table that aren’t big guns but still have incredible offerings," Madding said. "Wisconsin has all of the resources available that are the same if not better than others in the country, and I like to promote those companies."
Madding’s company provides marketing, advertising, technology and distribution services, print and multimedia fulfillment, event marketing and fundraising services. After consulting with clients on initial business plans, including budget, medium and target audience, Madding uses his database of vendors to find the best fit for his client.
"It was important to try to build a business structure with revenue because that is the therapeutic side of this for me, knowing that I am building something for others," Madding said.
Madding mainly serves executives with tight schedules who need outsourced help but do not have time to work one-on-one with Web designers and public relations specialists. Madding seeks out vendors, but he has also built a strong network of vendors that he trusts will deliver what he wants for his clients.
Faith is now 3 years old, weighs 17 pounds and looks like a healthy 12-month-old from the outside, Madding said.
"She is happy right now," Madding said. "She has been through a lot and to see her strength is amazing. The way she has been poked and prodded by doctors and in surgery, she is a tiny little girl and has really fought."
Faith has had seven surgeries at Children’s Hospital of Wisconsin, including a cornea transplant. Her stomach has been tied, she has had an ovarian cyst removed and she has had a feeding tube and a tube to release fluids from her stomach inserted.
"The hard part is the mental (aspect)," Madding said. "Because her condition is so rare, we don’t have a road map. Every call I get about her, my hair sticks up. It is a pretty rough life to live."
Fewer than 50 cases of Peters Plus Syndrome have been reported worldwide, Madding said. The family relies on the dedication of doctors at Children’s Hospital for Faith’s health, and they are forced to take Faith’s life day by day, Madding said.
"Her life expectancy in general is in question," Madding said. "Of course, we hope she can live for at least 20 years. She seems fine, but every four or five months, she lets us know that she is a sick baby because she will suddenly come down with a 105 degree fever and an infection."
Madding established the Just a Little Faith Foundation in January, an organization that promotes awareness and fundraising efforts to support the Special Needs Program at Children’s Hospital of Wisconsin and the Center for Blind & Visually Impaired Children. Just a Little Faith currently consists of 10 board members, and Madding serves as the executive director.
"Faith has had tremendous care and support through Children’s Hospital (of Wisconsin) special needs programs and in order for the programs to continue, it takes money," Madding said. "The foundation was set up to drive fundraising events and opportunities for Children’s patients and doctors."
Just a Little Faith contributes funds to the Center for Blind & Visually Impaired Children because Faith is legally blind. The foundation is currently in the early stages of setting up college scholarships for high school seniors involved in the medical field and planning family events for supporters of the organizations or of the foundation, Madding said.
"Thank God we had the program we had," Madding said. "It is the best in the country."
Faith and her parents, Chris and Karen Madding, who are now divorced, have been the poster family for a United Way of America campaign and for Children’s Circle of Care, a giving program founded by 20 Children’s Hospital institutions around the country. Establishing the foundation is a way for Madding to give back to the organizations that have been instrumental in Faith’s development and health, Madding said.
Madding is trying to grow his marketing company moderately while still tending to the foundation and his daughter.
"I am not looking to become a $100 million company," Madding said. "I want to stay true to what we do and give attention to the foundation."
The Madding Marketing Group currently works with six clients and Madding has plans to bring on an in-house Web designer and an information technology specialist.
Ultimately, he hopes that Just a Little Faith can offer a national event in every major city, he said.
"(Faith) is such a special baby," Madding said. "As a dad, I am beyond proud and want to do what I can."
Life is a daily struggle
Faith Madding’s rare genetic syndrome is called Peters Plus because it is essentially a genetic disorder called Peters with other unique traits, said Dr. W. Craig Leach, Faith’s pediatrician.
A telling sign of Peters syndrome was Faith’s eye abnormality, consisting of a clouded cornea, a congenital cataract and glaucoma, Leach said.
"The reason the Plus is in Peters Plus is because it can include pretty much anything," Leach said.
Faith was born severely premature as well as having Peters Plus and has a myriad of physical afflictions, including urinary tract abnormalities, a swollen kidney, a spinal abnormality, corneal abnormality, hearing impairment, short limbs and feeding difficulties. She has a tube that drains her urine, her intestines don’t move, she has a low platelet count and receives nutrition from a total parenteral nutrition (TPN) system that is administered intravenously through a central line, Leach said.
"It is quite an involved syndrome," Leach said. "Faith is often in the hospital, and we worry often about little things with her like fevers."
If a child without health problems comes down with a fever, physicians may tell parents to wait a day before bringing the child into the hospital. When Faith has a fever, specialists have to immediately make sure that the fever is not a signal of an infection in her IV central line or worry that she has an infection in her bloodstream, Leach said.
Leach has been working with Faith and her family since she was transferred to Children’s Hospital of Wisconsin shortly after being diagnosed with Peters Plus.
"It is tough to imagine a child who is essentially a dwarf, is very tiny still and is also blind and deaf, does not have an intestinal tract and has a urinary tract that has some problems," Leach said. "It is a stormy scenario, but she is a little cutie."
As Faith matures, she is gaining mobility, beginning to improve her communication skills and has ongoing therapy for development, including verbal skills by learning sign language, Leach said.
She is becoming more interactive with others, including her caregivers, Leach said.
"Through all of this, it is always amazing how infants and toddlers keep a big smile," Leach said.
Leach serves as Faith’s outpatient coordinator and practices from Pediatric Consultants of Wisconsin-CMC in Wauwatosa, an affiliate of Children’s Hospital of Wisconsin.
"She is a cute little girl with a package of different things that she is dealing with and that her family is dealing with too," Leach said. "Luckily, Children’s is helping with its resources."
June 10, 2005, Small Business Times, Milwaukee, WI