Bringing Awareness to Hunter syndrome

Pastor Ayakao Watkins and Michael Whitaker-Russell

BY RAVEN JOY SHONEL, Staff Writer

ST. PETERSBURG — It was Saturday, Oct. 15. The sky was gray with a light mist being carried in the wind. As Monique Whitaker ran around the James B. Sanderlin Center making sure her event ran smoothly, her son Michael Whitaker-Russell was enjoying all the intention that the day afforded him. Today was his day.

The Praise…With Michael Day was all about bringing awareness to Mucopolysaccharidosis type II (MPS II), also known as Hunter syndrome. This rare condition affects many different parts of the body and occurs almost exclusively in males. It is a progressively debilitating disorder; however, the rate of progression varies among affected individuals.

“I want to bring awareness because I feel like with awareness we can have more research, with more research a cure,” said Whitaker, as she cited only 1 in 165,000 people are suggested to get it.

Persons with MPS II bodies can’t break down a kind of sugar that builds bones, skin, tendons and other tissue. Those sugars build up in their cells and damage many parts of the body, including the brain. Exactly what happens is different for every person.

Whitaker’s goal is to make it a mandatory test for babies to be screened at birth. Even though there is no cure, the earlier it is caught the more options are available for treatment.

Michael was diagnosed at 17 months old. Being a preschool teacher at the time, Whitaker knew her child wasn’t reaching certain milestones. She went through two pediatricians before she found one that really listened.

“She said, ‘Yes, I’m going to look and do all kinds of test and find out what’s wrong with your baby,’” Whitaker said of Dr. Elizabeth Reilly Hays at St. Pete Pediatrics.

Within a few weeks Dr. Reilly Hays diagnosed him with Hunter syndrome.

Whitaker headed up to Duke University, who is leading the charge on MPS II research. There she decided to do unrelated bone marrow transplantation.

“When we went to Duke they were amazed that a pediatrician could have even diagnosed him,” she said. “Now we only see her. I love her, he loves her.”

Michael is developmentally delayed. At nine years old, he’s on the level of about a four year old in some areas and a much older person in other areas.

Unlike many children with the disease, Michael can walk and talk, and boy does he! He could be seen that morning running around visiting different play stations and talking to his friends and family.

“As they get older,” said Whitaker, “the disease gets more progressive and it takes a lot from them.”

Unfortunately, he doesn’t qualify for the latest research trials because he received a bone marrow transplant all those years ago.

“I chose to do the bone marrow transplant versus doing the enzyme replacement therapy and waiting on research to come through.”

Even though he does not qualify, Whitaker’s goal is to “still get the work out regardless of what he qualifies for to tread the path for someone else,” she said.

Another side effect from the disease is scoliosis. It prevents Michael from walking long distances, so he uses his trusty wheelchair.

And even though she was told Michael wouldn’t live past five years old, the nine year old is “still moving and living and I’m just blessed that he’s still here,” stated his mom, who said her biggest foundation is her trust in God.

Putting together the MPS II awareness event was not an easy task. She was met with a lot of corporate turndowns.

“I didn’t get as much support as I thought I would get.”

But the business that did open up their checkbooks helped to make the day a success, including Whole Foods, Fresh Market and PDQ in Pinellas Park, who provided the vendors with lunch.

With the help from Team Michael, a committee put together by members of Kingdom Bible Christian Church where she faithfully attends, they all were able to pull off the event without a hitch.

“It was a lot of work of getting everybody together,” she said. “This is my very first event. I’m blessed; I’m grateful.

The Praise…With Michael Day was catered to families with special needs children.

“Anyone who is dedicated to special needs children, they are here today,” she said.

Kidz Club Medical Daycare, One Source Medical, South Pinellas Autism Project, We Rock the Spectrum kids gym, just to name a few, all showed up ready to educate the masses.

Instead of bounce houses and shooting hoops, Whitaker used her old teaching skills and created sensory activities to get the minds and bodies of the young ones stimulated. Even a Zumba® session was conducted to get the blood flowing. Entertainment that morning included praise dancing and live gospel music.

“Monique is extremely organized,” said senior Pastor Ayakao Watkins of Kingdom Bible Christian Church.

She’d have to be to maintain a full-time job and keep up with Michael’s needs. A typical day starts at about 5:30 a.m. After prayer, he sits in a chest vest for 30 minutes to shake him and make him cough so that fluid doesn’t settle and cause pneumonia.

She has to assist him with everything, but the one thing he can do on his own is pick out his clothes.

“He picks Ninja Turtle shirts just about every day; Ninja Turtles and the Bucs.”

As the Family Community Liaison at Maximo Elementary, she has to be to work before his school opens, so she drops him off at Kidz Club Medical Daycare and he takes the bus from there to school, which is Nina Harris Exceptional Student Education Center.

Once they make it home in the evening, Michael rides his bike designed for special needs children to keep him active.

Even meals aren’t typical in this household. Michael eats only natural and organic homemade meals, no processed food allowed in her house. He’s on strict 45 grams carbohydrates a day diet. Even his liquids have to be thickened with a solution as to not go directly into his lungs and give him pneumonia.

Pastor Watkins makes sure that her congregation helps out when they can. If Whitaker’s late coming home from work, no worries a church member will be there to collect him.

“We support her with whatever she needs for Michael. He is a very intricate part of our church. From the day he was diagnosed I’ve been with Mike,” stated Pastor Watkins.

Watkins said the year Michael was born there were only 13 children diagnosed with the disease in the United States.

“I knew what the doctor’s report said that he wouldn’t live past five, he would not walk or talk. To see him almost reach 10 and walking and talking, is a real miracle,” commented the pastor, who said Michael has a connection with everyone in the church.

Whitaker plans on making Praise…With Michael Day a yearly event, and with the large crowd that turned out to support her efforts, next year will be bigger and better.