Parents Raise Awareness About Rare Diseases

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Wednesday, March 6, 2013

 The VanHoutan siblingsThe VanHoutan siblings, from left, are Noah, 8 and Laine and Emily, 7. Noah and Laine suffer from Batten's disease, a rare and fatal neurological condition. (Tangie Sheets, Handout)

On a bad week, Hallie Munro sees upward of 10 doctors. Often her joints ache so badly that she cannot get out of bed, her lungs wheeze and struggle for air, her stomach pierces so much that she does not want to eat.

Noah and Laine VanHoutan were once typical children who loved to laugh, play, run and horse around. Now, both are confined to wheelchairs, suffer from seizures and have lost most or all of their sight.

Hallie, and Noah and Laine have very different diseases, but their families have bonded over the struggle to care for young children with incapacitating conditions. To help raise awareness, their parents recently partnered with the Global Genes Project to promote Rare Disease Day at Downers Grove elementary schools.

Hundreds of Grade School District 58 students, staff and faculty wore the organization's blue jean ribbons to support the VanHoutan and Munro families Feb. 28.

"Our goal is just to open that dialogue," said Necia Munro, Hallie's mother. "We want the community as a whole to understand that you may not understand each individual condition, but as we band together we can raise awareness for rare diseases in general and support each other."

"We just want people to be aware that things can happen to you or your kids, and they are important," said Tracy VanHoutan, Noah and Laine's father. "It's not just our family."

The Global Genes Project is a nonprofit advocacy group based in southern California that raises awareness for rare and genetic diseases, according to the website. The National Institutes of Health Office of Rare Diseases Research states there are around 7,000 rare diseases, defined as affecting fewer than 200,000 in the United States.

Hallie, 7, suffers from heterotaxy, a disease in which chest and abdominal organs are situated on the wrong side. In Hallie's case, it also means that she is missing half of both intestines and has five spleens, her mother said. The complications compel Hallie and her parents to periodically visit 18 doctors in several states, and have kept the first-grader home from Pierce Downer Elementary School dozens of times this year.

"We just went through a really long period when we wondered, 'Is there anyone else out there like our baby? Is there anyone who understands what we're going through?'" Munro said. "It was very isolating."

In the past year, Munro has found a network of other parents whose children all have the same condition.

"It's made a huge difference in the way that I'm able to cope and deal with everything that's going on," Munro said. "It's also made a difference for Hallie, being able to show her pictures of other children and tell her that there are other kids like her."

Noah, 8, and Laine, 7, both have Batten's Disease, a fatal and inherited neurological condition that causes loss of motor functions. Both have the late infantile version, meaning that the disease strikes after years of normal development and sufferers usually die between ages 8 and 12, according to the NIH.

Noah began having problems when he was 3 and was getting hand tremors. Later, he had seizures and his speech became impaired. Before his 5th birthday, a doctor at Duke Children's Hospital called with the sobering diagnosis. The VanHoutans then had their then-3-year-old twins, Laine and Emily, tested even though neither was showing symptoms. The tests confirmed that Laine had the disease while Emily did not.

Noah is now completely blind and cannot walk or talk. Laine has about 20 percent of her vision remaining and can only muster vague sounds when she tries to communicate. Both require feeding tubes and are part of the School Association for Special Education in DuPage program at Kingsley.

The VanHoutans started their own organization, Noah's Hope, and have raised money to fund research studies on Batten's. They've lobbied to spur more research on rare diseases and innovative treatments.

"We've gotten incredible support from community members, family and friends," Jennifer VanHoutan said. "Many parents of children with this disease don't have that support. We feel like we have a responsibility to do more because we can."

But the VanHoutans know that even if they help push research forward, it is likely too late to help either of their children. In 2009, they told the Tribune they were still optimistic that they'd be able to save Laine, but even that hope has diminished.

"Even if we were to get something to a clinical trial, it's more than likely that Laine won't be eligible," Tracy VanHoutan said. "And that's hard. We've seen that timeline slip away with Noah."

Munro and Jennifer VanHoutan said they're looking forward to planning a bigger event for Rare Disease Day next year. Nevertheless, both families said that just having people acknowledge the issue, however modestly, makes an impact.

"We know what it's like to not have community behind you," Munro said. "I'd pick (Hallie) up from school and there'd be kids helping her with her backpack. I'm sending my child to a place that cares for her personally. For kids to treat her that way is a gift I can't give her."

Contact
Dawn Rhodes
cdrhodes@tribune.com

Source: Chicago Tribune

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