Good deeds all the way around
Lucas Price, 6, son of Matt and Stephenie Price, poses with Jamie Holmes, founder of Jamie’s Dream Team, in his Washington home.
Lucas Price
Matt and Stephenie Price are firm believers in paying it forward, and they continue to do so in a big way on behalf of their 6-year-old son, Lucas.
The Washington couple are organizing a team, Walk for Lucas, in the Highmark Walk for a Healthy Community May 13 at Stage AE in Pittsburgh. The money they raise will benefit Jamie’s Dream Team, a nonprofit organization based in McKeesport that assists individuals who have a serious illness, injury, disability or trauma.
“They give back 1,000 percent,” said Jamie Holmes, founder of Jamie’s Dream Team. “They’ve given back so much.”
Jamie was born with a rare disorder known as V.A.T.E.R. Syndrome that can cause congenital abnormalities of the vertebrae, lower intestine, trachea, esophagus and kidneys.
Jamie had abnormalities in all of those areas, and has had more than 45 surgeries and/or medical procedures since she was born, including surgeries to reconstruct her esophagus, trachea and lower intestine and to fuse several vertebrae in her spine. One of her kidneys disintegrated, and her remaining kidney does not fully function.
“Although I was seldom without pain and sometimes embarrassed about my condition, when friends and family showed up to support me with balloons and other gifts, I felt like a princess,” she said.
“I remember wanting to share this feeling of joy with the other kids at Children’s Hospital that I would meet. All I wanted was to give them my balloons, and have them feel a little of the happiness that others had brought to me.”
So, in 2005, at the age of 18, Jamie established Jamie’s Dream Team in an effort to offer hope and lift the spirits of those with physical and mental challenges.
And that’s how the Price family got to know Jamie.
It was through Jamie’s Dream Team two years ago that Lucas Price received free therapeutic horseback riding lessons at Horse ‘N Soul in Washington.
“From there, we became like family,” Stephenie said.
Lucas recently was diagnosed with Bethlem myopathy, a congenital form of muscular dystrophy caused by mutations in the type VI collagen genes, resulting in the formation of abnormal type VI collagen or reduced amounts of type VI collagen. The decrease in type VI collagen disrupts the extracellular matrix surrounding muscles cells, leading to progressive muscle weakness and joint stiffness in the fingers, wrists, elbows and knees.
It also affects the skeletal muscles and causes scoliosis, and during childhood, delayed developmental milestones may be noted, leading to trouble sitting or walking. Treatment is symptomatic and supportive, meaning the treatment is directed at the individual symptoms that are present. There is no cure.
The fact there was a problem was apparent almost as soon as Lucas was born. When he was 2 days old, he was diagnosed with hip dysplagia and placed in a pelvic harness for eight months.
“As he got older, he could put weight on it,” his dad, Matt, said.
In addition, the muscles in Lucas’ neck were so weak that when he would crawl, he would drag his forehead.
Lucas has weighed 37 pounds for two years. The pediatrician was trying to increase his appetite, and in two months, Lucas put on 21 pounds.
But he fell in October and developed cellulitis and bronchitis, and he lost the weight he had gained. He hasn’t walked in two months.
“It’s like he has a black cloud above his head,” Matt said.
Lucas is scheduled for heel-cord surgery on his feet in April to reduce the tightness and help him walk properly.
“When he walked, he would walk on his toes,” Matt said. “At least the surgery will get him down on a stable base, and it will help his spine straighten out.”
Before Lucas can have the surgery, however, he needs to gain some weight. To expedite that process, he recently had a gastrostomy tube, also called a G-tube, inserted through his abdomen that delivers nutrition directly to the stomach. Matt said his son is receiving 420 extra calories a night.”
“He now goes to school with a full stomach,” Matt said. “He doesn’t let anything get him down. He’s 6, so you have to wonder, ‘Does he know what pain is?’ He’s got a great outlook, and a positive attitude.”
That’s partly why he is known as the mayor of kindergarten at Trinity East Elementary School, where, Stephenie said, the support Lucas has received has been tremendous, rivaling only that of his family, which includes an older sister, Sierra, and Jamie’s Dream Team.
“We owe them so much,” Stephenie said, referring to Jamie and her nonprofit organization.
And it all started with the horseback riding lessons, which have helped improve Lucas’ posture and confidence.
“He goes with the stride of the horse. He has a very good therapeutic routine,” Matt said. “He does not like to trot until his neck is stronger. There’s a look of fear on his face when he trots.”
Lucas also takes swimming therapy, and last year when his pool collapsed, Jamie’s Dream Team came to the rescue again, delivering a new pool within a month.
“I can turn dreams around within minutes,” said Jamie, whose organization relies on grants and fundraisers to make dreams come true.
Those dreams have included celebrity meet and greets with Avril Lavigne and KISS, birthday parties, home and backyard makeovers, weddings and trips to Disney World, Hollywood and the Outer Banks, N.C.
“I’m very sick myself, but this keeps me going,” Jamie said.
And after seeing how Jamie’s help has benefited Lucas, the Prices are doing all they can to make sure she can continue to make others’ dreams come true.
In addition to realizing individual dreams, Jamie started hosting a Christmas party three years ago for families she has helped through Jamie’s Dream Team, flying Santa Claus in in a helicopter and providing gifts on the families’ wish lists.
“Those memories are priceless. It’s like that day, they don’t have that sickness,” Stephenie said.
To make a donation to Jamie’s Dream Team in the Highmark Walk for a Healthy Community, visit http://hcf.convio.net/site/TR/Pittsburgh/HighmarkWalk?pg=entry&fr_id=2106, then click Pittsburgh event. Last year, the walk benefitted 78 health and human service organizations and raised over $444,000.