A WOMAN whose rare medical condition means she’s only 39 inches tall has devoted her life to helping others. 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, and it affects bone development 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 helps her to relieve some of the symptoms. She said: “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 said that she typically gets around the house without needing a wheelchair and added: “I depend on a local transportation system to get me to and from work but my mom has a van that my chair can go off on. So I always say I'm independently dependent.” 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 committees. Besides her active lifestyle, Kendra is also passionate about fashion but admitted that shopping is challenging due to her height and she often needs to shop at kids’ outlets. Kendra said that, “fashion is a way of expressing your attitude and your way of life and just another step towards independence” because, according to her, people with disabilities often lose a lot of independence due to restrictions of their body. 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. 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.”
