Matt Kristensen's hair sometimes told the story of what he loved. The year he loved the Utah Jazz's Bryon Russell, he shaved his head. When it grew out, he dyed it purple, because by then he loved the whole team.
The last four years of his young life, his hair was green every winter, in honor of the Utah Grizzlies, who loved him back as their unofficial mascot and "No. 1 fan."
When Matt died in December 2002 at age 16, his folks, Mark and Roxann Kristensen, were already building his legacy. They founded Angel's Hands Foundation to raise money for research about Hunter syndrome, the rare genetic condition that killed him. But Steve Stauffer, a friend who helped them start the foundation, had a different suggestion. He'd seen the Kristensens juggle essentials like time and money to meet Matt's needs. Why not, he suggested, focus on quality of life. There was so much you had to do and pay, even with good insurance. And there are others like you.
They started helping, as they could, other families struggling with Hunter syndrome. But it didn't take them long to realize there were many other families coping with rare conditions, equally unsupported simply because they lack the numbers to form a national organization or have clout. So they started on a case-by-case basis helping them, too. As the foundation can, since it's small, it helps pay for practical things, such as equipment that insurance companies balk at buying. It has, on occasion, helped families travel outside Utah for medical treatments. While Utah's health-care system is amazing, notes Kristensen, specialists in a very rare disease may be somewhere else. And it provides comfort and pleasure, as well. Those families often defer even small vacations to pay insurance co-payments and deductibles and other expenses associated with the illness. The group helps with physical therapy that insurance won't cover or even some doctor bills. And they provide emotional support, too.
They try to get the families together for fun things about once a month. This weekend, for instance, they're teaming up with Wasatch Adaptive Sports Program for a picnic and playtime at Snowbird. They go to ballgames and Matt's beloved hockey games.
To make it work, they rely on donations. Valley fire departments host a motorcycle ride and car show, the proceeds benefitting the foundation's efforts. Utah Central Credit Union had held several annual golf tournaments to help the foundation.
They've just teamed up for a very unusual partnership. A company called PowerZoning has a patented process that extracts cold air from basements and pulls it into other rooms that are too hot during the summer, then reverses the process in winter to make homes more comfortable and reduce utility costs.
Rex Halbeisen, president and CEO, has five healthy children of his own and decided the company would like to help needy families that have sick children, especially those who are sensitive to temperature extremes.
So through Aug. 17, working with Angel's Hand Foundation, they're taking applications and nominations. They plan to donate and install the PowerZoning system in the homes of five to 10 families, anywhere in Utah, that have a child under age 18 who is sensitive to heat or cold because of an illness and who bear a financial burden because of the child's medical bills.
Recently, the company donated one of its climate-control systems to the family of Mason Shaw, 3, of Orem, who was born prematurely and suffers lamellar ichthyosis, a rare, inherited skin condition that throws his body temperature out of whack.
Because Matt's enzyme deficiency affected every cell in his body, he was often in pain, says his dad, "but he didn't complain much and was always smiling and happy." He was "an incredible little guy and anybody that met Matt was touched by an angel."
Now they're using Angel's Hands to touch others, as well.
For information on the foundation, visit www.angelshands.org. To nominate a needy family for the PowerZoning system, visit http://www.powerzoning.com/families-in-need.htm.
E-mail: lois@desnews.com