‘Dwarf Delight’ Was Exhausting Gained. Will a Development Drug Undermine It?

‘Dwarf Pride’ Was Hard Won. Will a Growth Drug Undermine It?

"I can do anything that anyone a foot taller can do with small accommodations," Ms. Schimmel wrote in an email, adding that Vosoritid had sent a message that people with achondroplasia were "broken".

Melissa Mills of Jacksonville, Florida, who does not have the disease, said she had already decided that her 4-year-old daughter, Eden, would use vosoritide if it was approved by the F.D.A.

Yes, Ms. Mills could get a $ 900 custom bike for her daughter to ride or teach her to drive with pedal extenders, but she will consider an alternative. "With dwarfism, the world wasn't built for my child. So if there is something I can do to help them navigate the world a little better and on their own, I want to do it," she said.

After Eden was diagnosed, Ms. Mills said, she joined any support group she could find to learn more about her daughter's condition. Her questions about treatments that increase height created tension. "The more I got involved in the groups and the L.P.A." – the organization Little People of America – "The more I withdrew."

The debate over the drug resembles a decade-long discussion among deaf people about cochlear implants, with some exceptions to the suggestion that the device should "fix" them.

Vosoritide, said Mark Povinelli, president of L.P.A., "is one of the most controversial things we've come across in our 63-year history."

The organization does not endorse specific treatments, but does encourage members to consider more than height in medical decisions. "We want to show that you can lead a completely fulfilling life without having to worry about the rate of growth," said Povinelli, describing the fixation on height as a social problem.


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