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.
South Africa Latest News, South Africa Headlines
Similar News:You can also read news stories similar to this one that we have collected from other news sources.
How Music Supervisors for Film and TV Source the Perfect SongsOn this week’s Working podcast, music supervisors Bruce Gilbert and Lauren Mikus discuss their recent work on Only Murders in the Building and Everything Everywhere All at Once.
Read more »
The Balvenie Unveils New Single Malts Aged in American and European Oak CasksThe Rare Marriages Range features single malts aged 25, 30 and 40 years.
Read more »
UK reports 104 more cases of monkeypox, mostly in menBritish health officials have detected another 104 cases of monkeypox in England in what has become the biggest outbreak beyond Africa of the normally rare disease.
Read more »
How ‘The Thing’ Got the Paranoia of a Divided Nation Right40 years later, John Carpenter's sci-fi horror classic 'The Thing' captures the distrust characteristic of today's world.
Read more »
Daniel Craig's Benoit Blanc Returns for 'Knives Out' Sequel 'Glass Onion: A Knives Out Mystery'The KnivesOut sequel officially has a title: 'Glass Onion: A Knives Out Mystery.'
Read more »
Amazon's Prime Air service will begin making drone deliveries in California this year | EngadgetStarting later this year, Amazon will begin making drone deliveries in Lockeford, California..
Read more »