A 34-year-old woman is only 39 inches tall due to her rare medical condition.
Kendra Gottsleben, from South Dakota, was born with a rare disorder called Mucopolysaccharidosis, Type VI (MPS VI) which affects bone development.
Kendra has now become a motivational speaker and helping others who are born with a similar condition.
She was featured as an inspirational speaker at TEDxSiouxFalls and has also written three books.
Kendra told Barcroft TV: “I was part of a clinical research enzyme trial, which made Naglazyme. The medicine that I received from 2002 is a weekly infusion of Naglazyme for about five hours, once a week.”
“It’s not a cure, it’s a treatment, but it helped me live my life because before there weren’t as many people living as long.”
Kendra was diagnosed with MPS VI when she was four. She has struggled a lot while growing up. Sometimes, she gets frustrated but most of the time, she is hopeful as she believes in ‘when life hands you lemons make lemonade’.
She said: “I live my life with the motto of when life hands you lemons make lemonade – we always have ups and we always have downs but I’m very positive. I always like to smile and I always like to give the sunny side of the situation.”
“I do have my doubts and I do have my frustrations, I just don’t always show it. The reality is there’s nothing I can do about that and it is what it is.”
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Kendra doesn’t use a wheelchair but needs a chair for long-distance.point 176 | She says: “I always use my chair for long-distance because of the lung capacity – I get tired way quicker and my heart gets tired.point 290 |
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“I depend on a local transportation system to get me to and from work or to other things but my mom has a van that we can load my chair on. So I always say I’m independently dependent.”
Despite the challenges she has to deal with, Kendra is positive about her life and wants to focus on helping others.
She said: “I do believe to a certain extent my purpose here is to help others. If somebody would ask me: ‘If you could go back and not have MPS, would you decide not to?’ I really would say no, because I’ve gotten a lot of amazing experiences because of MPS.”
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