For the VanHoutan family, the miracle treatment came too late. But without their fight, the Beedle family wouldn't be where they are today.
, the VanHoutan family was waging a war against the same disease that many knew nothing about.
Their seemingly healthy 4-year-old son Noah began suffering from seizures, speech impairment and balance issues — symptoms of CLN2 that eventually steal a child's ability to walk, talk and see."You just can't believe that something like this can happen to little kids," Tracy said.Noah's little sister, Laine, also had the CLN2 gene. Her twin sister Emily did not.
On April 27, 2017, the first treatment called Brineura hit the market — thanks in part to the research funded by the VanHoutan's."Of course I would love to have my children here today, but if they can't be here they might as well be working their magic from above," said Jen VanHoutan. "For us, the future is measured in moments, the smiles, the laughs, the time spent together, and this treatment has afforded us so many more of those moments and for that, our hearts are forever grateful," said Amanda Beedle.
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