High hopes for Hannah
“Her great uncle was saying something at a family gathering, and she just started giggling uncontrollably,” she said.
Jenn waited two years to hear Hannah’s laugh, but she might have waited forever if not for treatment that Hannah received thanks to the community’s generosity.
Hannah, who just turned 2, has cerebral palsy, making it difficult for her muscles to perform even simple tasks such as swallowing and holding up her head.
Her parents, Josh and Jenn Perry, wanted to get an experimental oxygen treatment for Hannah, but their insurance wouldn’t pay for it, and they couldn’t afford it on their own.
But the community rallied around Hannah. The “Hannah’s Hope” benefit in Edgerton raised $16,500 in August. Other fund-raisers, including one at Mocha Moment in Janesville and one at Josh’s workplace, the Wisconsin Department of Administration, and corporate donations added to the total.
In all, the family received $38,500 in just a few months.
“I still have no idea where all that money came from,” Jenn said. “I thought it would take a year or two to come up with the money.”
The money allowed Hannah to start treatment in October, and she finished the week before Christmas. Twice a day, she sat in a chamber in Fitchburg with an “oxygen hood” that looked like a space helmet over her head.
Now that the treatment is over, the real work is just beginning. Hannah spends two hours a day in physical therapy and one hour a day in speech therapy.
The Perrys have created a therapy room in their house with colorful mats and tools. Jenn coaxes Hannah to roll down a bright red ramp or sit propped up by tie-dyed sandbags. Jenn often holds an MP3 player showing Hannah’s favorite show, “Hannah Montana,” in front of her to encourage her.
Jenn can measure Hannah’s improvements by minutes. Before Hannah started treatment, she couldn’t hold her head up at all. By the end, she could hold her head up for one minute and 45 seconds.
“Her record for sitting by herself is three minutes,” Jenn said.
The Perrys had hoped the treatment would allow Hannah to eat on her own instead of being fed through a tube. That hasn’t happened yet, though Hannah did take 17 bites of macaroni one day, Jenn said.
Still, Jenn hopes it will happen someday. The doctors told her Hannah could continue to see improvements up to six months after the treatment.
“Her mouth is getting stronger,” Jenn said. “Her tongue is moving in ways it didn’t before.”
There’s some indication the Perrys’ insurance might start paying for part of the oxygen treatments, which would allow Hannah to go through another round, Josh said.
Meanwhile, they’ll work with Hannah to build on the foundation she got with the first treatment. They’re not sure if she will ever walk or talk, but they’re thankful for the improvements she’s made, Jenn said.
“I’m just really proud of her because it was really hard work for her,” she said.
Last updated: 10:01 am Thursday, December 13, 2012