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Benefit May Help Girl Regain ision Imprimare Email
Optic Nerve Hypoplasia
Luni, 23 Februarie 2009 14:11
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Source: Beloit Daily News

By Hillary Gavan

Family hopes stem cell treatment in Thailand will improve daughter's health

One Beloit mom and daughter are gearing up for the trip of a lifetime. Pamela Hottenstein is taking daughter, Cassondra Boyda, 17, to Thailand for what she hopes will be a life-changing stem cell treatment.

To help pay for the trip, friends and family are hosting a benefit starting at 2 p.m. March 14 at the Odd Fellow Lodge, 22 N. Main St., Janesville. There will be food, raffles and live music, according to organizer Barb Hansen.

Cassondra is the daughter of Pamela and James Hottenstein, a roofing supervisor at Corporate Contractors Inc. The couple has two other children - Hannah, 9, and Gracie, 2.

Cassondra was born with the underdevelopment of optic nerves and a pituitary gland as well as midline abnormalities of the brain. Her mother said doctors noticed something was different about Cassondra when she was 2 weeks old and her eyes started jerking. As she grew older, Cassondra looked young for her age and had developmental delays.

Cassondra's condition has rendered her completely blind, hormonally insufficient and with significant cognitive and speech delays. Although Cassondra takes growth hormones and an array of other medications, there hasn't been much doctors can do for her.

Today, Cassondra attends the Wisconsin Center for the Blind and Visually Impaired in Janesville.

She still has many challenges. Because of her hormone imbalance she often has behavior problems and can be moody. Although she can understand her family, she only has a few words she can clearly speak.

“She kind of has a language of her own,” Pamela Hottenstein said.

Pamela Hottenstein was thrilled, however, when she found out that there might be some hope for her daughter's condition. She learned about the Beike Biotech, a company with hospitals in China and Thailand, which has been successful in treating children like Cassondra with umbilical cord stem calls.

Beike has more than 60 Ph.D. researchers focusing on stem cell research. They have been treating patients with stem cell injections since 2001. As of Oct. 15, 2007, Beike had treated more than 2,000 patients with stem cell injections for diseases such as Alzheimer's, ataxia, autism, ALS, brain trauma, cerebral hemorrhage, cerebral palsy, Guillain-Barre, encephalatropy, spinal cord injuries and more, according to Beike's Web site.

The stem cells - taken from the umbilical cord of infants - are delivered through intravenous injections into the spinal cord fluid or surgical injections. Except for the surgical injections of the stem cells, the treatments are done as outpatient procedures.

Stem cells can replenish dying cells and regenerate damaged tissues. Due to the use of stem cells, some blind children have been able to have a degree of restored vision, and others with speech problems have shown verbal improvements.

Cassondra has already been accepted for treatment and will need at least six sessions. The cost of the treatments is $33,000, not including airfare or living expenses for the six- to seven-day stay in Bangkok. The family's goal is to raise $45,000 for the trip. So far they've only raised about $5,000.

Because of all the strict FDA regulations, Cassondra's mother said she won't be able to undergo a surgery in the United States for 10 years. Even if the procedure's approved, it may be far more costly for the treatments than in China or Thailand.

Pamela Hottenstein said her doctors at home support her decision. The mother feels that something positive will come from the treatments.

“I know and believe she will get good results,” Pamela Hottenstein said.

The benefit will be entertaining, and Pamela Hottenstein hopes it will raise money for the trip. Music will consist of a jam session, or eight hours of different musicians performing. Because Cassondra likes macaroni and cheese, there will be plenty on hand as well as barbecue. Some of the 100 raffle items include a $250 gift certificate to a furniture store, stays at various hotels and much more.

Donations can be made at any First American Credit Union, 746 Fourth St., Beloit, in care of Cassondra Boyda.

To make a donation of money or to donate items to raffle, please call Luanne Stein at 608-359-3669 or Barb Hansen at 608-290-4753.
 

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