Tuesday, June 24, 2014

A Moment Worth Catching: Rays’ Kiermaier and a Little Fan at All Children’s Hospital

Kevin Kiermaier has made quite a splash in his short tenure this season with the Tampa Bay Rays, not just with his bat but with an array of memorable catches. Yet the rookie outfielder could have a tough time topping the grab he made Tuesday morning at All Children’s Hospital.

Kiermaier had just stepped into the room of a 2-year-old patient named Steven, amid making the rounds with reliever Jake McGee to offer some smiles, words of support and autographed baseball cards.

At that very instant, Steven’s 6-year-old big brother, Carson, looked up from the TV show he was watching across the room. He's a quiet child so what happened next took everyone by surprise. He leaped off the couch and shouted,  “KEVIN KIERMAIER!!” 

Without missing a beat, Carson ran across the room and lunged into the 24-year-old  ballplayer’s arms. Ever the defensive standout, Kiermaier caught hold of him and they hugged for several seconds – one more highlights-reel moment for the Rays newcomer.

Veteran athletes don’t often get that kind of reaction in their room-to-room visits. But Carson loves the Rays and he’s been paying close attention, it seems, to the play-making Kiermaier while watching the team’s games on the TV in his little brother’s hospital room.

All of sudden, there he was – the real-life baseball player, and Carson couldn't believe his eyes. 

"He is never like that with anybody," said his mother, Tracy Knott. "He tends to be a little shy, especially with people he doesn't know."

“I was shocked to see him do that,” added his grandmother, Phyllis Knott, chuckling at the recollection. “He absolutely loves the Rays and watches them all the time, and he loves playing baseball.” Mostly he plays in the yard of his parents’ home in Clearwater, with grandma tossing him tennis balls and Carson giving them a whack.

But despite Carson’s interest in baseball and the Rays, she had no idea that he knew who Kevin Kiermaier was – or that he’d be so thrilled to see him. “And Kevin was so nice,” she added. “He embraced that moment for Carson, and that was really sweet of him to do.”

For Kiermaier, making his first visit to All Children’s, it was just as special.

“That’s very, very rare for a little kid to do that,“ he said. “For him to yell, ‘Kevin Kiermaier’ right when I walked in and then give me a hug, that was pretty wild. It was just really cool that he was so happy. That’s what it’s all about. That’s why we come here, for times like that. It’s hard to put into words.”

No need. This time, a little boy said it all.

Kevin Kiermaier! Rays rookie captures a memory with Tracey, Carson and Phyllis.
See more photos from the visit by Rays' Kiermaier and McGee.










Monday, June 23, 2014

Special Care for Special Kids at Johns Hopkins All Children's Heart Institute's Williams Syndrome Clinic

They came from as far away as South Florida and Alabama, parents and young children buoyed by a day filled with specialized medical treatment, helpful information and hope.

The event that drew them to St. Petersburg was the bi-annual Williams Syndrome Clinic held by the Johns Hopkins All Children’s Heart Institute this past May. The families that attended shared a powerful bond in the unique spectrum of traits that link their young ones – and in the knowledge they are not alone in their journey.

Back home, those defining characteristics make Williams syndrome children stand out for their differences; yet what mattered here were their similarities and a reassuring sense of community that connected the families and staff.
Camila traveled with her mom from Miami for the WS Clinic.

Parents not only had their children examined by a range of expert All Children’s Hospital physicians but had a chance to talk to other families and learn more about Williams syndrome: a rare genetic disorder that occurs in roughly one of 10,000 births. It is marked commonly by heart, gastro-intestinal and kidney problems, a pixie-like facial appearance, mental ability from low average to mildly retarded, excellent verbal skills, a highly social demeanor and, very often, a passion for music.

The clinic is one of only 12 in the United States and has been an enormous help – both for new WS parents desperately seeking guidance and those with experience raising a Williams child. And it’s an example of how All Children’s is helping lead the way nationally with clinics that offer highly specialized, one-stop care, designed to help children with multiple needs.

Offered in the fall and spring, the clinic attracts families from around Florida and beyond – on this day from Miami, Jacksonville and Ashford, Ala.  – to be seen by All Children’s specialists in cardiology, nephrology, GI, neurology, genetics, endocrine, ophthalmology, audiology and developmental delays. And as it grows, the clinic hopes to add specialists to help in other areas of need for Williams syndrome patients, such as physical therapy, occupational therapy, speech/language and psychology. Growth is already on the horizon: The one-day clinic will be held over two days this fall for the first time, Oct. 9-10.

Hudson greets baby Liv, held by volunteer Alicia Klingensmith
“You have at least six or seven specialists that these families see on a regular basis, and for any one family, that can mean taking as much as six or seven days off,” said JHAC Heart Institute cardiologist and clinic organizer Gul Dadlani, M.D.  “And since their kids are probably seen twice a year, you’re really looking at 12-14 days off a year to get to all those appointments. So having disease-specific clinics like this basically allows these families to take one day off and see as many specialists as possible. They still get the same quality of care, and probably better quality of care – because on that day everything is focused toward this specific condition.”

Williams syndrome has received widespread attention over the past three decades from scientists and geneticists and increasingly been in the national spotlight – from a segment on 60 Minutes some 15 years ago to a music camp at Nashville’s Vanderbilt University involving various country music stars to a highly active and helpful parental organization in the Williams Syndrome Association.

Debby and Mikey Johnson with Dr. Dadlani 
But parents of newly diagnosed WS babies and children still frequently find themselves searching for answers and specialized medical care. And that is why many have flocked to All Children’s for the clinic started last year by Dr. Dadlani with a helping hand from a WS parent from St. Petersburg, Debby Johnson, whose 20-year-old son, Mikey, was a frequent patient at ACH during his childhood. She proposed the idea of an ACH clinic over the years and it was Dr. Dadlani who recognized the merits and brought it to life.

“I had the idea when Mikey was little,” Debby said. “We lived close to All Children’s and had fine doctors there, so we didn’t really need a clinic ourselves. But if you live a fair distance from your institution, it made a lot of sense to go a hospital and see several doctors in one day. The idea for this was to help families who might live in rural Florida or far from a big hospital.”

“I think just knowing that the specialists they’re seeing have experience with Williams syndrome is a huge relief,” added ACH nurse Heather Wilson, an RN practitioner and the WS Clinic Coordinator.

For Beth Jones, the six-hour drive from Ashford to have her 4-year-old son, Hudson, seen by Dr. Dadlani and others was completely worthwhile. Hudson was diagnosed with WS by his pediatrician at 22 months, after Beth became concerned that he wasn’t meeting developmental milestones. They were sent to a geneticist four hours north at the Children’s Hospital of Alabama in Birmingham and the doctor immediately recognized that Hudson had Williams syndrome..

“We were like, ‘What’s that?’ – we were very upset, because we’d been suspecting something was wrong for months,” Beth recalled. “We got him appointments with a cardiologist and had his eyes and ears checked. But many doctors where we’re from don’t know what Williams syndrome is. I always have to explain what it is every time we go in.”

She learned about the All Children’s WS clinic while perusing the Williams Syndrome Association web site for help, and knew St. Petersburg is where she and Hudson had to come. “I’m glad we found out about this because now I feel we’re getting a thorough check,” she said. “And I feel better, knowing what to do.”

Camila and Dr. Dadlani during lunch break.
Beth, Hudson and other family members savored the chance to mingle with the other parents during a lunch hour in the Children’s Auditorium. In the middle of the room, 7-year-old Camila, who traveled from Miami with mom Iris Linares, playfully checked Dr. Dadlani’s heartbeat with a stethoscope. Another Miami resident, Carmen Jury, expressed her enthusiasm about the help her 9-year-old daughter, Sophia, was receiving.

“It has been a very enlightening because of the education and information that has come from this,” Carmen said. “At each appointment, we’ve been able to learn something new.”

Not far away, Kylie Romero of Jacksonville talked about her difficult initial experience with her baby daughter, Liv. She was diagnosed at birth with a heart murmur and a looseness in her hips, so her doctor ordered a chromosomal test. At the follow-up appointment a month later, the cardiologist came into the room and informed Kylie that Liv had Williams syndrome.

“She was extremely ‘gloom and doom’ about it, and I just said, ‘Well, okay, what is Williams syndrome?’ “ Kylie recounted. “She immediately ticked off things like mental retardation, ‘cocktail personality,’ will never leave home or have to be in assisted living as an adult. We don’t have that cardiologist anymore.”

ACH RN Heather Wilson with baby Liv.
Shaken, she went on the computer to do research and the first one to reach out was Debby Johnson, who told her about how well her son is doing – and about the All Children’s WS clinic. Liv has gotten excellent care at All Children’s since then, and her mother is grateful.

“She’s hit every milestone – all her heart conditions have gone from moderate to mild and the problem with her hips has cleared up,” she said.  “Liv is perfectly healthy right now. She goes to a special needs day care and is thriving. She’s s a superstar.”

And one more WS patient shining with the help of All Children’s.

Friday, June 13, 2014

A Special Tampa Bay Rays Visit for a Pair of Teen Baseball Players Healing at All Children’s

On the seventh floor of All Children’s Hospital, two rooms on separate hallways held a similar story this past week: each connected by baseball and the frustration of boys sidelined from the game they love.

Sitting in a chair connected to an IV machine, 13-year-old Andre James watched television, recovering from a car accident that left him with an injury to his stomach that required surgery. Though he was lucky it wasn’t worse, Andre – a starting shortstop on his travel ball team – was feeling down about being laid up in the hospital while his Iron Pigs squad from Port Charlotte played a big tournament in Georgia.

Not far away, 15-year-old Eric Shrader lay in his bed, getting over surgery to repair a congenital sternum condition but struggling to get over missing the summer season pitching for his team.

And then, several minutes apart, each received the surprise of their lives.

It came in the form of a brief visit from a star player for the Tampa Bay Rays dealing with his own disappointment over a season-ending setback, 24-year-old pitcher Matt Moore.

Moore’s high hopes for the 2014 campaign on the heels of a stellar 17-4 showing last year abruptly ended in April with an injury to his left elbow. It resulted in the operation commonly known as Tommy John surgery and will require a long, grueling road back for Moore to retake the mound sometime in 2015.

He was the perfect person to make a surprise stop – offering perspective, stressing patience and providing words of encouragement to two boys wishing they were back on the diamond.

“Andre, nice to meet you, dude,” said Moore, making the rounds as part of a visit sponsored by Sagicor financial services company, while Rays reliever Brad Boxberger talked to patients on another floor.

Andre looked up in surprise, and his wide eyes conveyed plenty even though he found words hard to come by. He answered with mostly short replies, but fixed a gaze and smile on Moore as the 2013 All-Star carried the conversation with questions and friendly encouragement.

“The good news is you’re still really young and there are a lot more summers to go,” Moore replied when Andre explained he was missing a big tournament. “You look pretty tough – I’m sure you’ll hang in there and this’ll be nothing for you.”

Andre listened intently as Moore switched topics to his own injury. “I got hurt my second game of the year – something in my elbow popped,” he said. “It came out of nowhere and all of a sudden I just felt like something bit my arm. They pretty much had to reconstruct my elbow joint and I’ll be out for a full year. But I’m going to work hard to get back out there, and I know you will, too.”

Moore signed a picture of himself for Andre and posed for some photos – and left him with plenty to tweet his teammates in Georgia about. “It was shocking – I thought, ‘Is that really Matt Moore?’ when he walked in,” the incoming ninth-grader at Sarasota High School said after the visit. “What he said kind of makes me feel better  because I know what he’s going through.”

Down another hall, Eric was just as stunned when there was a knock on the door and Moore entered. His parents, Rick and Kandice, were just as excited to see the pitcher as their son – the three used to live in Alabama and watched Moore play for the Rays’ Class AA farm team, the Montgomery Biscuits.

Moore shared his story though Eric knew plenty about it already, including the no-hitter the Rays lefty threw for Montgomery in 2011. “I definitely wish you a speedy recovery – you’re probably a quicker healer than I am,” Moore said with a smile after signing and posing for photos.

“That was awesome,” Eric said after the third-year Rays pitcher left to spread cheer elsewhere on the floor. His mother chimed in, “He was saying, ‘It would be so cool if somebody from the Rays could see me when I was in here.' So this was definitely a memorable day.”

One in which two young ballplayers on the mend got more than they could have imagined.
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