‘Small Steps’ make big difference in child’s life
By Denise Baran-Unland Correspondent December 24, 2012 1:10PM
Physical therapists Stacy Simanis (left) and Valerie Miller, owner of the Lockport-based Small Steps LLC, often provide holiday cheer for their youngest clients so that, despite battling disabilities, they retain the magic of childhood. SUBMITTED PHOTO
Updated: January 27, 2013 6:10AM
Santa Claus required a jolly red swim suit and eight inflatable reindeer during part of his midnight run this year since one of the “nice” recipients on his list — a 2-year-old foster girl with an unspecified aggressive muscle disorder — was spending her Christmas with her family at a resort featuring an indoor water park and an indoor amusement park.
The two-member staff of Small Steps Therapy LLC in Lockport contacted Grizzly Jack’s Grand Bear Resort in Utica and asked them to make a magic wish come true for a seriously ill child who had thoroughly her enjoyed her first visit to that resort last summer.
“We just made the call,” said Valerie Miller, physical therapist and owner of Small Steps Therapy. “Grand Bear is providing everything at no cost. This is such a deserving family with a special foster mom that has kept the family together and asked for the kids with special needs. She is an angel to do that.”
Brett Sullivan, general manager of Grizzly Jack’s Grand Bear Resort (www.grizzlyjacksresort.com), said the resort is committed to realizing the wishes of children in need, especially during the holiday season. Through its Operation Claus, five families in the community will also receive an overnight vacation.
“We’re just trying to provide grand memories for families,” Sullivan said. “It is the right thing to do.”
This is not the first time Small Steps has provided “extras” for their youngest clients, although this is the biggest outreach the company has tackled. During the holidays, it customarily sets up “Santa home visits” when disabilities prevent children from meeting Santa Claus at the mall for the traditional holiday photo.
“We like to take the children’s focus off the medical issues and let them be kids,” said Stacy Simanis, physical therapist. “We don’t think it’s fair they have their childhood taken away with something they didn’t ask for.”
The little girl began receiving physical, occupational and developmental therapy at Small Steps this past summer, although her foster mother, who has three grown children, one grandchild and several other foster children, noticed the muscle disorder when the little girl was first starting to walk.
A trip to the pediatrician initiated an endless round of blood work, CT scans and MRIs. The results point to a muscle disorder, but so far, the tests have not positively pinpointed precisely which one is plaguing this little girl. Because so many aggressive muscle disorders exist, the exact one may never be defined.
Therapy strengthens the girl’s muscles even as her body grows progressively weaker. She has noticeably regressed over the last two months. No one knows if she’s simply experiencing a flare-up or if the downward spiral will continue.
Although the girl walked at eight months, she now requires a walker and assistance at mealtimes, since even bringing a fork to her mouth requires considerable effort. Very possibly, Simanis said, the girl will not see adulthood. That doesn’t mean, however, she can’t have a great childhood.
“It’s important for her to know that there are people in the world who are interested in helping her, that they won’t just run away and give up,” Simanis said. “We want her to know she has a strong support system and that we’re here to help her.”
Compassion, yes, Pity, no. It’s definitely out of place here. Despite her struggles, this is one very happy little girl, someone who enjoys playing, as any little girl does.
“I want to be clear that she is a fighter. She is learning new things every day,” Simanis said. “She likes coloring and playing games on my iPhone. I have one app called ‘colored dots.’ The dots just float around on the screen. When she touches them, they turn into bubbles.”
