(Published Thursday, August 2, 2007 11:30:13 AM CST)
A d v e r t i s e m e n t
By Stacy Vogel Gazette staff
BELOIT-Hannah Perry and her brother Noah are best buddies.
They love to lie on the floor and play with their toys together, and sometimes Hannah fusses when Noah isn't there.
But Hannah-a happy 20-month-old who loves music and "Wheel of Fortune"-can't do some things that her 8-month-old brother already can: simple skills such as rolling over, sitting up and eating solid food.
Hannah has cerebral palsy, a disease that makes it difficult for her brain to tell her muscles what to do. She has trouble swallowing and holding up her head. Her parents, Jenn and Josh Perry, Beloit, feed her through a tube.
"She pretty much can't do anything on her own," Jenn said.
Hannah Perry exercises her neck muscles while having fun with her dad, Josh Perry, at their Beloit home.
Kyle Stevens/Gazette Staff
The Perrys hope that might change soon. They want to take Hannah to an experimental treatment center in Fitchburg that might help reverse some of the effects of the disease-if they can come up with the $22,000 the treatment will cost.
To raise the money, Hannah's extended family is hosting a benefit Saturday, Aug. 11, in Edgerton.
Doctors have known about Hannah's condition since her birth, when she went 8 minutes without oxygen. At Wisconsin Integrative Hyperbaric Center in Fitchburg, Hannah would spend time in a high-pressure, oxygen-rich environment to try to undo that damage.
After 80 such sessions, she would undergo intense physical therapy to train her brain to control her muscles.
The treatment, which is not covered by insurance, takes months. Results vary, but the Perrys hope the chamber will be effective because Hannah is so young.
"There is no cure for cerebral palsy, but it could change her life if she could swallow on her own, even if she could sit up," Jenn said.
Josh Perry
Jenn Perry
The disease has taken its toll on the entire family. Jenn, a former Janesville School District teacher, decided not to return to work after Hannah's birth. She rarely takes both children out during the day because Hannah needs a special chair to hold her up.
Therapists and care workers visit Hannah twice a day to condition her limbs and help her learn basic skills.
Josh's sister, Rachel Perry Gilbertson of Edgerton, has seen how the family struggles with simple tasks such as getting ready in the morning. That's why she and her mother, Deborah Perry, decided to hold a benefit to help Hannah get the treatment.
"We just started calling friends and family and saying, 'We need you to do this or that,' and everyone pitched in," Rachel said.
The event will include food, raffles, silent and live auctions, a DJ and a band. Meanwhile, Jenn's dad, Gary Hallowell, has been soliciting donations from local businesses.
The family hopes to raise $20,000, though Jenn suspects they might need a few more fund-raisers to get that much, she said.
Though the treatment could change life for the whole family, Jenn mostly wants a better life for her daughter.
"It's so hard to see her frustrated because she can't move the way she wants to, she can't play the way she wants to," Jenn said.
If you go What: Hannah's Hope Festival.
When: Saturday, Aug. 11. Food, games, raffle and auctions from 3 to 7 p.m. Live music to follow.
Where: Racetrack Park, 1006 Stoughton Road, Edgerton.
Cost: Suggested donation of $5 for adults and $3 for children age 13 and older.
More info: The benefit is still accepting auction, raffle and bake sale donations. Call (608) 884-8833 or visit www.hannahshope festival.com.
