About Jenny

Through a mutual Facebook friend, I recently came in contact with Jenny Wakenell. She is a college graduate student with Turner's Syndrome. As you will read, TS doesn't hold Jenny back, she is an awesome example of what hard work and determination can do. Thank you to Mrs. Wakenell and Jenny for sharing with CHH! Jenny Wakenell is really doing something to make a difference!!






Due to Jenny's very busy schedule in school, her kind mom, Maureen, sent me this part of her story....
Jenny just started graduate school at the University of Michigan. Jenny wants to get a master’s degree in social work, is carrying a full schedule of classes and began an internship this semester. Jenny wasn’t diagnosed with Turner Syndrome until she was almost fourteen years old and just entering high-school. We were sent to a specialist (pediatric endocrinologist) because she was so very short (4’5”) at the time. We just thought it might be a question of more vitamins or something since we did have a number of short relatives. We were shocked to learn it was due to Turner Syndrome, a condition we never heard of. Jenny was immediately put on high doses of human growth hormone and gained seven inches in three years. Since her diagnosis in 2002, my husband, Jenny and I have made it our mission to learn all that we can about TS as well as NLD (Nonverbal Learning Disabilities) which can also be a result of Turner Syndrome. NLD can affect girls with TS in varying degrees. NLD may cause problems with motor skills, visual/spatial/organizational misperceptions and/or social difficulties. Therefore, early identification is extremely important. Fortunately, Jenny has always been an “honor student” both in her Catholic elementary and high schools. In college, she won several scholarships and awards, completed two honors programs and graduated with “high distinction.” Jenny does have some Nonverbal Learning Disabilities though, but through hard work, dedication and determination, she has done extremely well academically. (She’s usually doing homework until the “wee hours” of the morning.) Since 2002, we have attended all the national Turner Syndrome Society annual conferences. This organization (based in Houston) can provide a lot of great information. In fact, Jenny is a volunteer on their e-board to answer inquiries and offer personal insights to people around the country. We have also been to a TS conference in Canada, and Jenny has been to several specialized camps for girls with TS. Jenny has also participated in a number of medical research studies, such as Dr. Allan Reiss’ neurological one at Stanford University, Dr. Carolyn Bondy’s TS biological profile at the National Institute of Health and Dr. Michael Silberbach’s “Healthy Heart Study,” among others. Even though we didn’t know Jenny had TS when she was growing up, we now have a much better understanding of why certain things happened when she was younger (such as her trouble learning to ride a two-wheel bike - a “balance” issue most probably connected with NLD, she eventually was able to master her bicycle, but it did take much longer than her two older brothers). Anyway, Jenny has developed an awareness campaign for TS/NLD. In addition to giving speeches and seminars, she has created a travelling self-teaching exhibit, “The Turner Town Project.” This interactive display is a collection of dollhouses with storyboards in front of each building depicting some of the everyday challenges of a girl with TS/NLD from birth through her later teen-age years. Medical posters, a reference/lending library, comparison growth charts, resource guides, “real-life” photos, etc. also accompany the project. If you would like to read more about “Turner Town,” there are some pictures on http://www.dosomething.org/project/turning-wheels-turner-syndrome-and-nonverbal-learning-disabilities-awareness-campaign.

This section was written by Jenny on her dosomething.org project page...
Just before entering high school, I was shocked to be diagnosed with Turner Syndrome (and Nonverbal Learning Disabilities) by a pediatric endocrinologist. My regular family physician had not previously treated anyone with Turner Syndrome. Since I never heard of these conditions before, I became worried and did not know what health impairments might occur from this disorder. I decided to learn all that I could about TS and NLD. My life suddenly took a new direction as I became immersed in research, awareness, and advocacy. It was important to meet experts, make contacts, reach out to others, and examine my own feelings about disabilities. I’ve attended medical camps and national conferences around the US and Canada and talked with specialists and authors. I have traveled to Stanford University, the National Institute of Health and other places to participate in vital research studies. It is my sincere hope that my involvement in these studies will lead to better recognition, identification and treatment for anyone afflicted with TS or NLD. I am a volunteer with the Turner Syndrome Society for email/phone inquiries and interviews. (Sometimes, students are seeking a first-hand account for school reports, but other callers are looking for advice or reassurance.) I have also helped out with the younger girls at the national conferences – mentoring is especially gratifying to me. Little is known about TS and NLD among the general public, teachers, and even many doctors, so I created a multi-media awareness campaign as an individual initiative for a Girl Scout Gold Award. I did not want others to experience the negative feelings of uncertainty and anguish that I experienced. I designed workshops and seminars and have given speaking presentations to both adult and youth audiences about these medical issues. I constructed a self-teaching traveling exhibit, “Turner Town,” a collection of dollhouses with storyboards about some of the troubles and triumphs of a girl with TS and NLD. In the stories, the community rallies around her and supports her through the obstacles she encounters. With proceeds from private fundraisers and my own personal funds, I established a specialized library of books about TS and NLD. Medical posters, photo collages, a resource guidebook, growth charts, tot lot block set and children’s activities are included to provide more detailed information. Currently, I’m raising money to purchase a trailer to bring the exhibit to the TSSUS Conference in Indianapolis this July.


Please check out Jenny's efforts and learn more about TS at : http://www.dosomething.org/project/turning-wheels-turner-syndrome-and-nonverbal-learning-disabilities-awareness-campaign