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Community Corner

Apple Valley Family Crosses Borders to Help Son with Rare Disorder

Alisa Palen has begun taking her son, Avery Whittaker, 10, who has Septo-Optic Dysplasia, to Mexico for stem cell therapy.

When twin brothers Avery and Anthony Whittaker were born, there was no reason to suspect they were different than any other bouncing baby boys.

So when the twins' mom, Alisa Palen, who lives in Apple Valley, noticed Avery wasn't visually tracking things as well as his brother Anthony at four months, she brought Avery to the ophthalmologist.

The doctor discovered that Avery’s nerve endings were underdeveloped. This discovery compelled him to look further and through a CT scan discovered that Avery was missing the septum in the middle part of his brain, and he was diagnosed with a rare condition called Septo-Optic Dysplasia.

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SOD is a congenital malformation syndrome characterized by underdevelopment of the optic nerve and absence of the septum pellucidum. The disorder is reported in one of every 10,000 newborns, according to the National Institutes of Health.

Avery, who is now almost 10, has no vision and also has autism. Daily medications, including a human growth hormone injection, keep Avery functioning.

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“He takes supplements every day basically to live," Palen said. "It's my life and sometimes it's been hard, but we've been living with this since he was a baby—it's all we know—so he gets around just fine."

The twins attend different schools, with Avery at the Academy for the Blind in Faribault. At school he gets his therapies and activities, and he also does speech and physical therapies at the Courage Center in Golden Valley.

"They don't really know a lot about it because the condition is so rare," Palen said.

Regardless of their days away from each other, Avery and Anthony, who does not have SOD, have a close sibling relationship.

"Having a twin brother is fantastic," Anthony said. "I always have a friend. He's nice, and caring and he doesn't pick on me. We share stuff too."

Palen said the lack of information on the disorder can make finding viable treatments more difficult, Palen said.

She finds support from other families with children with SOD, but most are spread throughout the country so she primarily leans on her support group of friends and family.

But after hearing about other children who have experienced success with stem cell therapy, Palen and family planned a trip to Mexico to see Dr. Fernando Ramirez, a stem cell therapist who practices in Tijuana. Stem cell treatment is currently illegal in the United States and can be seen as a controversial political issue. 

"We had heard from another parent that had a child with cerebral palsy and wasn't able to walk without a walker, and since treatment he is walking on his own," Palen said.

Traveling to Mexico in late August of 2010, the first treatment Avery underwent with Ramirez injected 40 million umbilical cord stem cells into his arms and feet, Palen said. According to information from the Mexico Stem Cells website, Ramirez is one of few physicians worldwide who is licensed by a national government—the Mexico Ministry of Health in Mexico City—to practice clinical human stem cell therapy. 

Traveling to Mexico for the therapy is a more accessible option than other countries that offer the same treatment.

"I don't mind going to Mexico to do the treatments because it is so close to San Diego and we only spend a total of 3-4 hours in the country," Palen said. "It is not as inconvenient as if we would have went to China to spend 35 days. That would have been much more difficult on Avery."

Because of the cost of stem cell treatment and Avery’s medications and therapies, on top of daily living expenses, the family has turned to fundraising events to help ease the financial burden.

One fundraiser that took place at the Green Mill Restaurant in Uptown, Minneapolis, raised around $4,000. Palen has also spread the word of Avery's condition and tried to rally support through a website she set up to keep people informed about Avery's journey and SOD, as well as to provide a place for people to donate.

The family will return to Mexico in late March for the second treatment, which will inject Avery with 30 million stem cells. 

Palen said she hopes the treatments will give Avery at least some vision.

“With the autism, having vision would help greatly with his understanding,” she said. “I went in with the intention that anything would be helpful, and I've seen that—I've seen him do things he hasn't done before."

"He's starting to repeat a lot,” she said. “He's starting to sing songs that we sang when he was a toddler. You know it's in there, it's just getting it out that is the hard part."

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