By Rafaela Kuznec @RafaelaKuznec
Scroll down for the full story
Videographer / director: Marcus Cooper
Producer: Rafaela Kuznec, Ruby Coote
Editor: Helen Mckee
Kendra Gottsleben, from South Dakota, was born with a rare disorder called Mucopolysaccharidosis, Type VI (MPS VI).
The symptoms of MPS include short stature and degenerative joint disease, it affects bone development and other vital organs.
People with MPS disorders don’t make the enzyme needed to break down the sugar chains. Over time, the waste that needs to be recycled within the cell doesn’t get broken down, and the build-up affects connective tissue, heart, lungs, eyes and other vital organs.
Kendra’s condition is so rare that it occurs in approximately 1 in 215,000 newborns.
The 34-year-old is receiving weekly infusions that help her to relieve some of the symptoms.
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 at the age of four but was only told about her condition by her parents once she turned 12.
Kendra remembered: “We went to a lot of hospital visits and doctor’s appointment but I didn't realise that not every other kid was doing that.”
Kendra said that she typically gets around the house without needing a wheelchair and added: “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.”
And Kendra has used her experiences to help those with similar conditions.
The South Dakota native was featured as an inspirational speaker at TEDxSiouxFalls, has written three books, mentored local young adults with disabilities and is involved in several local, state and national board/committees.
Kendra’s mom, Betsy Drew, told Barcroft TV: “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.”
Asked to describe her daughter, she 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 that despite trying to keep positive at all times, she, like everyone else, also experiences low moments in her life.
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.”
Besides her active lifestyle, Kendra is also passionate about fashion and says 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.”
However, the 34-year-old admitted that shopping might be challenging due to her height and she often needs to shop at kids’ outlets.
Showing 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’s goal is to show others how they can persevere to make the best of tough situations, even in the face of lifelong challenges.
Kendra told Barcroft TV: “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.”