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Health & Fit'He moved mountains:' Baby with rare disease inspires life-saving law before he dies

17:00  08 april  2019
17:00  08 april  2019 Source:   usatoday.com

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Authorities warn people to respect the land: ' He moved mountains :' Baby with rare disease He said bears, snakes, rivers and a lack of cellphone service are some of the dangers visitors to the Before you go after the treasure, consider your level of skill, preparation and knowledge of the area

He does not know that sickening thirst That sands one's throat, before The hangman with his gardener's gloves Slips through the padded door, And It is sweet to dance to violins When Love and Life are fair: To dance to flutes, to dance to lutes Is delicate and rare : But it is not sweet with nimble

'He moved mountains:' Baby with rare disease inspires life-saving law before he dies© Provided by Gannett Co., Inc. Bryce Harlan Clausen never walked or crawled. Never spoke a word. Barely smiled.

But in the all-too-brief 14 months of his life, the tow-headed infant accomplished something that must people never do: He inspired the passage of a bill to give others born with the disease that afflicted him a better shot at life.

Bryce died Friday, finally succumbing to the rare disease with which he was born. He passed away in his sleep, while on a family vacation to Florida, his father Joel said on Facebook.

But just weeks before he died, Bryce lay in the arms of his mother, Andrea, as Gov. Eric Holcomb signed into law a bill bearing his name that requires all infants born in Indiana be screened for Krabbe disease, the malady that affected Bryce, as well as other terminal illnesses.

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In addition, he also features an ominous building in NY with no windows and asks in hyperbole "WTF I would recommend that you watch first before reading further. Why? Too often we have people who He 's embarrassed. This is a metaphpor for grooming children into accepting being raped and having

Marry me before I turn into 'stone': Woman rushes down the aisle before rare disease leaves her unable to move . Rachel Winnard, 26, suffers from a rare and debilitating condition called Fibrodysplasia Ossificans Progressiva which means her muscles, tendons and ligaments are slowly

"I could spend all day talking about the impact he had on this world, but it doesn't even hold a candle to the impact he had on my life, my wife, and our families," Joel wrote on Facebook. "He was the bravest, toughest, most inspiring human I have ever met, and I am lucky to call him my son. His legacy is far greater than I could have ever imagined."

Not all states screen for Krabbe disease

Only 10 other states have added Krabbe to the list of mandatory newborn screenings, among them two of Indiana's neighbors, Illinois and Ohio.

With the passage of Bryce's law, Indiana now screens for 52 conditions, 5 of them added to the roster this year and last.

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There is very rarely going to be a post-mortem carried out, which means that, as a doctor, you have a think about the patient’s symptoms in the last two weeks of life or so. If I saw them in the last two weeks of life , what do I think was the most likely cause of death? There are, of course, other factors.

What will you discover? Because Brian liked… He discovered: Contemporary, Classics. “If you want to know what a man's like, take a good look at how he treats his inferiors, not his equals.” “To live is the rarest thing in the world. Most people exist, that is all.”

Holcomb tweeted Friday afternoon about Bryce's death, saying the infant left "a great legacy."

Had Bryce been screened at birth for Krabbe disease, his family could have sought a stem cell transplant that might have slowed or arrested the disease progress. Once the symptoms of the disease manifest themselves, it is too late for this therapy to have much of an effect, doctors say.

'He moved mountains'

For the first few months of his life, Bryce's parents had no inkling anything was amiss. At about four months of age, though, he stopped progressing and his condition continued to deteriorate as he missed milestone after milestone. His parents spent months looking for answers until Bryce was diagnosed last fall.

By then, it was too late for Bryce. At the time of diagnosis, the doctor warned his parents he would likely die before his second birthday.

His parents could not save their son but they hoped to spare others his fate. They campaigned successfully for the bill that passed both chambers of the Indiana General Assembly without a single dissenting vote.

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He said that he had found an old Roman coin (1) in the garden (2) and is going (3) to take it We had our car checked before we left on vacation (1) so as (2) it wouldn't cause us any trouble (3) on the way (4). He drove at a steady speed (1) of 50 mph (2) because (3) to save fuel for another half-hour (4).

So, long before he graduated, he began to shift the center of his life to New York. In those days he and his brother had an English governess who spoke the language very clearly and In the summer the six children were moved from the house in New York to a big estate in northern Connecticut.

At the time of his death, his family was vacationing in Florida, where they had gone on a "Greatest Hit" vacation, his father wrote.

"Today my wife and I have shed more tears than we ever have, but we want the world to know how proud of Bryce we truly are. He moved mountains. He made a law!" Joel posted on Facebook. "He will save lives someday and what greater gift in life is that?"

The family asked that in lieu of flowers, people donate to St. Vincent to create a themed room at Peyton Manning Children Hospital in memory of Bryce.

Contact IndyStar reporter Shari Rudavsky at 317-444-6354 or  shari.rudavsky@indystar.com. Follow her on  Facebook and on Twitter: @srudavsky.

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    This article originally appeared on Indianapolis Star: 'He moved mountains:' Baby with rare disease inspires life-saving law before he dies

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