Thirty-four-year-old Kendra Gottsleben, from South Dakota, has a congenital anomaly known by the medical name Mucopolysaccharidosis Type VI, MPS VI, which has caused her to be just 39 inches high.
MPS VI is characterized by unusually short stature, difficulty in bone development and retarded development of vital organs.
Watch to learn more about her inspiring story below.
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Video credit: Rumble
The condition inhibits the production of an enzyme in the body that is required for breaking down sugar chains.
Resultantly, the wastes continue piling up in the cell, ultimately having a degenerative effect on the connective tissue, lungs, brain, eyes, heart and other vital organs.
The probability of having this disorder is 1 in 215,000.
Kendra has to rely on weekly intravenous infusions to help relieve the symptoms of the disease.
Speaking to Barcroft TV, she said: “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 at the age of just four years but this finding was kept a secret from her by her parents until she was 12.
She recalled: “We went to a lot of hospital visits and doctor’s appointment but I didn’t realize that not every other kid was doing that.”
As of now, Kendra can easily roam around her house without having to use a wheelchair.
She said: “I always use my chair for long-distance because of the lung capacity – I get tired way quicker and my heart gets tired.
“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.”
The brave lady, who doesn’t believe in disability, is now using her first-hand experience to help people with MPS VI.
Despite her condition, the motivated and passionate lady has spoken at TEDxSiouxFalls and has penned down three books.
She has been a mentor for local youngsters with disabilities and has also involved local and state committees to help people.
Speaking to Barcroft TV, Kendra’s mother Betsy Drew said: “We always said: ‘Kendra has MPS but we don’t live MPS.’
“It’s something that she has, we don’t ignore it, we address it and then we go on and we live our life. And I think that’s kind of the way Kendra has lived her life.”
Speaking of her daughter, Betsy said: “She has had a huge impact on a lot of people.
“I’ll use a word that she doesn’t like me to use, but I do think that she is inspiring. She is just genuinely a good and caring person.”
Kendra said she tries to be positive all the time but there are times when she feels low.
“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,” she said.
“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.”
Kendra has a very classy fashion sense and believes that “fashion is a way of expressing your attitude and your way of life.”
“That’s just another step towards independence and that’s also empowering because when you have a disability and a rare disease sometimes we lose a lot of independence due to restrictions of our body,” she said.
“What I most enjoy about shopping is finding clothes that express how I feel about myself.
“I feel empowered and just showing that it is possible [to find clothes] even though I am 39 inches tall.”
Kendra also revealed that shopping is not an easy thing for her and most of the time she has to look for clothes and accessories in the children’s section.
Giving a tour of her wardrobe, Kendra said: “Pretty much everything in this closet is from a kid’s store or the kid’s section.
“Finding things that are age-appropriate for work, for going out, for going to an event, can be frustrating in the aspect that I would like to look like my peers.
“But then it’s also fun because when I do find an outfit that looks like something my peers would wear, I feel successful.”
Kendra aims to show people how to be positive all the time regardless of what hardships life throws at them.
“I do believe to a certain extent my purpose here is to help others,” she said.
“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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