Lindsay Baker, 31, who is living with Prader-Willi syndrome, made a splash at the 2022 Special Olympic Games in Orlando, FL by competing in and medaling in not one, but TWO swimming events! PWSA | USA had the opportunity to speak with Lindsay's mom, Delores, who shared her daughter's incredible journey from birth and her initial diagnosis, to finding her passion for swimming, and ultimately, her success on the U.S. Special Olympics team. Read her story below.
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Please share Lindsay’s journey with PWS.
Lindsay was born the second child in her family in 1991. We did not have any idea going to the hospital that our lives would be forever changed. She was floppy and presented as a failure to thrive as a baby. She had absolutely no interest in eating and the hospital team had no idea what was wrong with her. She endured a spinal tap and many other tests, but no answers. Lindsay spent her first month of life in the NICU as a subject of interest, but no one could come up with a diagnosis or reason for Lindsay’s health problems. She was presented with other issues over time, including a submucous cleft palate, which gave her the opportunity to attend our state’s Oral Facial Clinic. It was at this clinic that one of the doctors believed Lindsay had PWS. We went back to genetics and were given a confirmation of a deletion on her 15 P Chromosome. She was three years old. Although we knew all along that she was not going to see any miraculous improvement, that she would not become the world's definition of "normal," we were still emotionally devastated all over again. At birth, as her mother, I was able to watch a special needs video about PWS, and many other special needs syndromes. Now, three years later, I was getting a confirmation that this was our future.
When the genetics doctor explained to my husband and I about what her rare syndrome was, I felt devastated. I had already been prompted by God that this was our future, and the doctor was extremely surprised that I knew what this rare syndrome was. NOTE: There was no internet in 1991.
And so, we began our journey with PWS in 1994, three years after she was born. Upon her diagnosis, I immediately decided that I wanted another baby. I wanted a girl, a sister, so that she would have a friend. My husband agreed and we were pregnant with our 3rd and last child within a month of her diagnosis. The years were hard on us. We did not belong to a support group of any kind and had been given very little information. I was not able to connect with the national group until years later. Her early years were easier to control the insatiable appetite and emotional roller coaster. The teen years proved to be the most difficult. She met one friend in school that I believed had the same syndrome as her. Years later, it was medically confirmed, and he became her close friend throughout her early years. At age 14, he suffered a massive coronary heart attack and passed on. It was devastating for all of us, including Lindsay. She became very depressed, and she started foraging for food and gained a lot of weight. She had some severe medical issues and ended up in the hospital, where we connected with a nurse that knew of the syndrome and had a niece in the local PWS group.
Lisa Thornton had just taken over as the president of the Utah Prader-Willi Syndrome Association chapter and we attended our first annual fundraiser. We were connected to a group of other amazing families who lived a life with connections we all understand. We became involved in the group and have received incredible support for Lindsay and her two siblings over the years. If there is one thing that I could express to parents who are beginning this journey, it would be to get involved with your local PWS organization. There is so much strength in numbers, and in leaning on each other through this difficult journey. Our children need to know that they are not alone and that, with help, they can accomplish anything they set their hearts on to achieve. Their siblings need to know that it is ok to have a family that is different, that in a sense they are special too. Not that having locked food cupboards and limited access to food is fun for teenagers, because it is not, but that their siblings will make them better people with a better understanding of inclusion.
One of Lindsay’s great accomplishments is that she was a pioneer for the treatment of late adolescent and adult Growth Hormone (GH). At age 14, she was asked to participate in an adult Growth Hormone study. This was also when her eating had become difficult to control at school. Lindsay saw many immediate benefits from GH and was able to think clearer. She began developing muscle tone, growing in height, and having extreme growth and change. She was also losing some weight that she had gained as a teenager. But one thing that did happen as a side effect was that she had some rapid bone growth in her legs and as a result, one of her legs is two inches longer than the other. We believe the dosage was too high, and so she has issues with walking and weight bearing on her leg for long periods of time. This is another reason that she loves swimming so much because it takes away these issues.
When did Lindsay start swimming and how has this passion progressed over the years?
Lindsay learned to swim before she learned to crawl or walk. (Crawling at two years old and walking just before her 3rd birthday).
I began taking her to the swimming pool as an infant and she loved the water. She recognized that in the water she had more control than she did on land. We began swimming lessons at age two, and she took lessons for about 10 years. At age 15, the same year that we became connected with the UPWSA, Lindsay began swimming for the University of Utah Special Olympics Team. She loved it! We had found her thing. Lindsay is very competitive, and she loved swimming, racing, and competing. Because of her low tone and buoyancy, floating was super easy, and so was swimming. Everywhere we went as a family we were looking for places that she could swim. She would swim in the coldest water at hotels - as long as she could swim. She just loved it. Lindsay swims the Backstroke and the Freestyle strokes proficiently. She has earned more than 150 medals and ribbons competing in swimming, cycling, and bowling. The majority of those have come from swimming, but she is also very good at bowling, with a high score of 138 and an average score of 108. She switched swim teams after she graduated from high school to the Lehi Just for Kids swimming program, where she excelled even more under the direction of Michelle Holbrook and Stephanie College. Lindsay has a passion for swimming. She loves to go to the gym and swim. She will swim lap after lap practicing backstroke and freestyle, and diving for toys. She just absolutely loves being in the water.
Can you give some details surrounding the Special Olympics process?
Special Olympics activities and events were suspended for two years during COVID, like almost everything else in the world. Lindsay missed going to the gym and swimming, and we missed taking her. She missed Special Olympics and her Lehi Just for Kids team. She was gifted an above-ground pool from the Utah Prader-Willi Syndrome Association Chapter one summer during COVID. From then on, she could swim again right in our backyard. It had always been our dream to give Lindsay her own built-in pool in our backyard, and that dream became a reality for her.
In early Spring of 2021 Lindsay received a letter in the mail from the UTAH SPECIAL OLYMPICS TEAM inviting her to a lottery draw.
As a gold medal Olympian for the Utah Swim program, she was invited to apply to become part of the Utah Lottery for a spot on the Utah SOUT team going to the USA Special Olympics in June 2022 in Orlando, Florida. They were planning to pick only two swimmers to represent the state of Utah, one male swimmer and one female swimmer.
It would mean that if chosen from the lottery of swimmers, she would spend nine days in Orlando on the USA stage competing with 50 states and the Caribbean islands. What a big opportunity! We discussed it with her, and she applied for the Lottery. In July of 2021, she watched live with her Aunt Rochelle and Uncle Lance as her name was drawn out of the hat to represent Utah as the only female swimmer on the Utah Special Olympics Team going to Florida in June of 2022. Watch the video below to see Lindsay's reaction when she found out she was selected:
She would be competing in the 25M Backstroke, the 50M Backstroke and the 50M Freestyle events. She would need to lose weight and begin training immediately. She was so excited, and disciplined, and worked so hard for nearly a year to go to the USA/Caribbean Island stage to compete. She swam every chance she had. In the beginning, we committed to having her swim three days a week. As the games became closer, we upped that to five days, then seven days a week prior to the games. She loved swimming and was happy to put in the work. She learned to swim with fins on and how to do exercises to strengthen both her arms and her legs. She had amazing coaches that she loved and was willing to work so hard for. She learned what she could and could not eat and was extremely motivated to follow the plan.
As a mother, the most difficult thing for me was wondering how they would accommodate her diet, and if she would be able to maintain her own self-control. We spent months training not only physically, but also how to survive in a non-PWS world with food. We spent as much time training for swimming as we did on what she could and could not eat. We decided to have her try the Nutrisystem diet and it has worked out great. She has lost over 35 pounds and has done a great job maintaining her weight on this controlled food diet. We sent some Nutrisystem breakfast items and some protein shakes for the mornings when we knew the breakfasts were not going to accommodate her.
What did Lindsay, and your family, look forward to the most ahead of this exciting opportunity?
Lindsay shared the happy news with the family right away and everyone was on board to go with her to cheer her on (see pictures below). Both her older brother Stephen and her younger sister Emily are married with families of their own. Everyone was on board to make the trip to watch our girl compete on the USA/Caribbean stage. Lindsay has one living grandparent, her 85-year-old grandpa from Idaho, and we decided that this was an experience that we did not want him to miss either. What an exciting opportunity to connect with other families like our own and watch other incredible athletes that have worked so hard to accomplish such an amazing once-in-a-lifetime experience. It proved to be everything we expected and more.
We let her study the Disney menu that she would be ordering from, and we practiced having her order her own healthy food. We took her through every setting, including the airport setting, that we thought she would be in. Her coach was amazing in asking questions, researching on her own, and supporting Lindsay with a healthy Olympic meal plan. Lindsay did great! She was a champion at both swimming and maintaining a healthy self. She attended the Florida Healthy Athletes program, and we could not be prouder of our girl.
Do you, or Lindsay, have any advice or words of wisdom for other individuals living with PWS, especially those who aspire to or are participating in sports?
Staying healthy means making sure you are getting plenty of activity, no matter who you are. As a person with PWS, it is even more important because of their slow metabolism. There is no end to the possibilities of what a person with PWS can do. We have been inspired by so many others, who have worked so hard. Lindsay says that you need to find what you love and then believe in yourself. Prior to going to the games, although Lindsay was a very good swimmer, she had many swimming issues that she needed to improve. She needed to learn to keep swimming all the way to the wall on her backstroke, not to glide in and worry about hitting her hand. She also needed to overcome her fear of just jumping into the pool and not crawling in slowly. She needed to learn that her legs were the power to help her win. That she had to learn to rhythmic breath on her freestyle. Ultimately, she had to learn to believe in herself and that others would too. Lindsay overcame all her obstacles and improved her time on each of her races by up to 30 seconds.
She missed getting the Gold by 1/2 a second in her 50M backstroke but was elated to bring home both a Silver in that race and a Bronze in her 50M Freestyle. Lindsay has learned that she can do hard things but that she has to put in the effort to make it happen. We learned that Lindsay has so much ability and that it is never too late to tap into new experiences and opportunities.
We are so grateful for the experience to watch Lindsay compete and excel in this big arena. She knows, as she expressed on one of the rides while we were enjoying the Disney parks, that her family loves her so much. As we shared her journey through social media during the games, we learned that Lindsay is so loved by so many.
Is there anything else you would like to share?
Thirty-one years ago, when I was handed my sick, weak baby who was fighting for her life, I could not understand that being a family with a special needs child truly has so much meaning and can be filled with so much joy. If there was one word to describe our experience as a family, it would be JOY. We all felt the joy of those athletes as they carried the torch to light the flame, and each competed in their sports with great sportsmanship. Their lives have meaning, and they give our lives meaning. We are so proud of our special Olympian Lindsay! As a family, we thank her for sharing her journey with us as she competed in the USA Special Olympics 2022 Games in Orlando, Florida.
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Jennifer Bolander has been serving as a Special Education Specialist for PWSA (USA) since October of 2015. She is a graduate of John Carroll University and lives in Ohio with her husband Brad and daughters Kate (17), and Sophia (13) who was born with PWS.
Perry A. Zirkel has written more than 1,500 publications on various aspects of school law, with an emphasis on legal issues in special education. He writes a regular column for NAESP’s Principal magazine and NASP’s Communiqué newsletter, and he did so previously for Phi Delta Kappan and Teaching Exceptional Children.
Evan has worked with the Prader-Willi Syndrome Association (USA) since 2007 primarily as a Crisis Intervention and Family Support Counselor. Evans works with parents and schools to foster strong collaborative relationships and appropriate educational environments for students with PWS.
Dr. Amy McTighe is the PWS Program Manager and Inpatient Teacher at the Center for Prader-Willi Syndrome at the Children’s Institute of Pittsburgh. She graduated from Duquesne University receiving her Bachelor’s and Master’s degree in Education with a focus on elementary education, special education, and language arts.
Staci Zimmerman works for Prader-Willi Syndrome Association of Colorado as an Individualized Education Program (IEP) consultant. Staci collaborates with the PWS multi-disciplinary clinic at the Children’s Hospital in Denver supporting families and school districts around the United States with their child’s Individual Educational Plan.
Founded in 2001, SDLC is a non-profit legal services organization dedicated to protecting and advancing the legal rights of people with disabilities throughout the South. It partners with the Southern Poverty Law Center, Protection and Advocacy (P&A) programs, Legal Services Corporations (LSC) and disability organizations on major, systemic disability rights issues involving the Individuals with Disabilities Education Act (IDEA), Americans with Disabilities Act (ADA), and the federal Medicaid Act. Recently in November 2014, Jim retired.