My Story: A Tribute to Wendy Coates

Blog Banner

In this post, we pay tribute to Wendy Coates (August 1956 – May 2021). Wendy was a woman with Turner Syndrome (TS) and fierce advocate for others with TS and the Turner Syndrome Foundation’s (TSF) mission. She leaves a strong legacy, and we honor her strength, positive attitude, and commitment.

Remembering Wendy Coates

Wendy Coates, who lived and worked in Manhattan for over 30 years, was a vibrant performer, mentor, and advocate for those with TS and their families. Wendy lived her life to the fullest, even while battling a serious form of cancer. She was unfailingly positive and continued to enjoy many of her favorite things, including Broadway shows, movies, good friends, her family, and her TS community. 

Wendy cherished her work with the TS community, such as teaching theater at the Boston International TS Summit, a one-week, residential program for girls aged 12 to 19. She also wrote an essay for Standing Tall with Turner Syndrome, sharing her journey with TS. As a TSF volunteer, she presented many workshops, mentored families, and advocated for increased TS awareness. Wendy may have been tiny, but she had a huge heart, and her enthusiasm was an inspiration to many.

Wendy, diagnosed at 12

"[Wendy] gave me so much hope for my daughter and for this mission. Her wit and huge personality was a healing and inspirational force for so many."

Wendy's Story

Wendy contributed an essay to Standing‌ ‌Tall‌ ‌with ‌TS, a book of essays edited by Claudette‌ ‌Beit-Aharon‌. More about the book can be found here

View from the Yellow Brick Road

My‌ ‌name‌ ‌is‌ ‌Wendy‌ ‌Coates‌, ‌and‌ ‌I‌ ‌am‌ ‌a‌ ‌54-year-old‌ ‌woman‌ ‌with‌ ‌Turner Syndrome. ‌Being‌ ‌small,‌ ‌wanting‌ ‌to‌ earn my living as a performer, and making a life for myself in New‌ ‌York‌ ‌City‌ all‌ ‌presented‌ ‌challenges.‌ ‌Some‌ ‌of‌ ‌them‌ ‌I’ve‌ conquered,; ‌others‌ ‌I‌ ‌haven’t‌ ‌yet.‌ 

‌I‌ ‌was‌ ‌diagnosed‌ ‌in‌ ‌1969‌ ‌at‌ ‌the‌ ‌age‌ ‌of‌ ‌12.‌ ‌I‌ ‌went‌ ‌for‌ ‌a‌ ‌physical‌ ‌prior‌ ‌to‌ ‌Girl‌ ‌Scout‌ ‌camp‌ ‌that‌ ‌summer‌, ‌when‌ ‌my‌ ‌family‌ ‌doctor‌ ‌noticed‌ ‌how‌ ‌underdeveloped‌ ‌I‌ ‌was.‌ ‌He‌ ‌‌suggested‌ ‌to‌ ‌my‌ ‌parents‌ ‌that‌ ‌I‌ ‌see‌ ‌a‌ ‌renowned‌ ‌endocrinologist‌ at‌ ‌the‌ ‌Jefferson‌ ‌Hospital‌ ‌in‌ ‌Philadelphia. We‌ ‌lived‌ ‌in‌ ‌a‌ ‌suburb‌ at‌ ‌the‌ ‌time.‌ When‌ ‌I‌ ‌met‌ ‌Dr.‌ ‌Abraham‌ ‌Rakoff,‌ ‌he‌ ‌seemed‌ ‌an‌ enormous ‌but‌ ‌very‌ ‌kindly‌ ‌presence.‌ ‌He‌ ‌was‌ ‌most‌ ‌impressed‌ ‌that‌ ‌my‌ ‌father,‌ ‌who‌ ‌was‌ ‌an‌ ‌aeronautical‌ ‌engineer,‌ ‌had‌ ‌meticulous‌ ‌graphs‌ ‌that‌ ‌he‌ ‌had‌ ‌done‌ ‌by‌ ‌hand,‌ ‌charting‌ ‌my‌ ‌height‌ ‌and‌ ‌weight‌, ‌along‌ ‌with‌ ‌my‌ ‌brother‌ ‌and‌ ‌sister.‌ ‌I‌ ‌still‌ have‌ ‌mine ‌to‌ ‌this‌ ‌day.‌ After‌ ‌the‌ ‌diagnosis,‌ ‌my‌ mom‌ ‌sat‌ ‌next‌ ‌to‌ ‌me‌ ‌on‌ ‌her‌ ‌bed‌ ‌and‌ ‌explained‌ ‌what‌ ‌it‌ ‌all‌ ‌meant.‌ ‌I‌ ‌think‌ ‌the‌ most‌ ‌important‌ ‌thing‌ ‌she‌ ‌said‌ ‌was‌ ‌not‌ ‌to‌ ‌let‌ ‌anyone‌ ‌treat‌ ‌me‌ ‌‌as‌ ‌younger‌ ‌than‌ ‌I‌ ‌actually‌ ‌was.‌ ‌Now‌ ‌that‌ ‌I’ve‌ ‌heard‌ other‌ ‌‌women’s‌ ‌stories,‌ ‌I’m‌ ‌even‌ ‌more‌ ‌grateful‌ ‌for‌ ‌the‌ ‌love,‌ ‌care‌, ‌and‌ ‌‌grace‌ ‌my‌ ‌parents‌ ‌demonstrated‌ ‌during‌ ‌this‌ ‌time.‌ 
My‌ ‌family‌ ‌moved‌ ‌to‌ ‌Erie,‌ ‌Pennsylvania‌ ‌the‌ ‌summer‌ ‌I‌ turned‌ ‌14.‌ ‌I‌ ‌was‌ ‌about‌ ‌to‌ ‌enter‌ ‌high‌ ‌school.‌ ‌As‌ ‌you‌ might‌ ‌imagine,‌ ‌I‌ ‌was‌ ‌intimidated.‌ ‌In‌ ‌spite‌ ‌of‌ ‌that,‌ ‌I‌ ‌took‌ ‌advantage‌ ‌of‌ ‌an‌ ‌opportunity‌ ‌to‌ ‌join‌ ‌the‌ ninth‌ ‌grade‌ ‌chorus.‌ ‌I‌ also‌ ‌auditioned‌ ‌for‌ ‌the‌ ‌Spring‌ ‌Musical‌–‌Oklahoma!‌ Well,‌ ‌not‌ ‌only‌ ‌did‌ ‌I‌ ‌get‌ ‌cast‌ ‌in‌ ‌the‌ ‌show,‌ ‌but‌ ‌landed‌ ‌the‌ ‌plum‌ ‌role‌ ‌of‌ ‌Ado‌ ‌Annie!‌ ‌All‌ ‌of‌ ‌a‌ ‌sudden‌, ‌I‌ ‌wasn’t‌ ‌the‌ ‌new‌, ‌little‌ ‌kid‌ ‌who‌ ‌looks ‌like‌ ‌she‌ ‌belongs ‌in‌ ‌grade‌ ‌school,‌ ‌but‌ ‌the‌ ‌really‌ ‌funny‌ actress‌ ‌with‌ ‌the‌ ‌wonderful‌ ‌singing‌ ‌voice.‌ ‌During‌ ‌the‌ ‌curtain‌ ‌call‌ ‌of‌ ‌our‌ ‌last‌ ‌performance,‌ ‌when‌ ‌my‌ ‌classmate‌ ‌Bob‌ ‌(playing‌ a‌ ‌marvelous‌ ‌Will‌ ‌Parker)‌ ‌and‌ ‌I‌ ‌came‌ ‌on‌ ‌stage‌ ‌to‌ ‌take‌ ‌our‌ ‌bow,‌ ‌the‌ ‌entire‌ ‌auditorium‌ ‌rose‌ ‌to‌ ‌its‌ ‌feet‌ ‌as‌ ‌we‌ ‌reached‌ ‌the‌ ‌edge‌ ‌of‌ the‌ ‌stage.‌ ‌That‌ ‌moment‌ ‌changed‌ ‌my‌ ‌life.‌ ‌I‌ ‌now ‌knew‌ ‌what‌ ‌I‌ ‌wanted‌ ‌to‌ ‌be‌ ‌when‌ ‌I‌ ‌“grew‌ ‌up.”
Lots‌ ‌of‌ ‌performances‌ ‌followed‌ ‌in‌ ‌high‌ ‌school‌ ‌and‌ college,‌ ‌and‌ ‌yes,‌ ‌I‌ ‌often‌ ‌played‌ ‌children.‌ ‌I‌ ‌became‌ ‌a‌ ‌theatre‌ ‌major‌ ‌and‌ ‌was‌ ‌accepted‌ ‌into‌ ‌the‌ ‌advanced‌ ‌acting‌ ‌program,‌ which‌ ‌lead‌ ‌to‌ ‌an‌ ‌apprenticeship‌ ‌at‌ ‌the‌ ‌Berkshire‌ ‌Theatre‌ ‌Festival‌ ‌in‌ ‌western‌ ‌Massachusetts‌ ‌during‌ ‌the‌ ‌summer‌ ‌of‌ ‌1978.‌ That‌ ‌was‌ ‌followed‌ ‌by‌ ‌a‌ ‌role‌ ‌in‌ ‌their‌ ‌production‌ ‌of‌ Carnival the‌ ‌following‌ ‌summer.‌ ‌Finally‌, ‌I‌ ‌made‌ ‌the‌ ‌big‌ ‌move‌ ‌to‌ ‌New‌ York‌ ‌City‌ ‌on‌ ‌Labor‌ ‌Day,‌ ‌1979.‌ ‌During‌ ‌this‌ ‌time,‌ ‌my‌ body‌ blossomed‌, ‌thanks‌ ‌to‌ ‌what‌ ‌my‌ ‌mom‌ ‌called‌ ‌my‌ ‌”magic‌ ‌pills.‌”‌ ‌Although‌ ‌it‌ ‌was‌ ‌hard‌ ‌for‌ ‌me‌ ‌to‌ ‌accept‌ ‌the‌ ‌fact‌ ‌that‌ ‌I‌ ‌wouldn’t‌ ‌‌be‌ ‌able‌ ‌to‌ ‌have‌ ‌children,‌ ‌I‌ ‌focused‌ ‌on‌ ‌the‌ ‌fact‌ ‌that‌ ‌there‌ ‌are‌ a‌ ‌myriad‌ ‌of‌ ‌reasons‌ ‌why‌ ‌women‌ ‌do‌ ‌not‌ ‌have‌ ‌children.‌ ‌It‌ ‌isn’t‌ the‌ ‌stigma‌ ‌that‌ ‌it‌ ‌used‌ ‌to‌ ‌be,‌ ‌especially‌ ‌for‌ ‌women‌ ‌in‌ ‌the‌ ‌career‌ ‌I‌ ‌chose.‌ ‌My‌ relationships‌ ‌with‌ ‌men‌ ‌had‌ ‌ups‌ ‌and‌ ‌downs,‌ ‌‌like‌ ‌any‌ ‌young‌ ‌woman,‌ ‌with‌ ‌more‌ challenges‌ ‌coming‌ ‌from‌ ‌my‌ ‌profession‌ ‌than‌ ‌the‌ ‌fact‌ ‌that‌ ‌I‌ ‌have ‌Turner‌ ‌Syndrome.‌ ‌
The‌ ‌biggest‌ ‌show‌ ‌I‌ ‌was‌ ‌cast‌ ‌in‌ ‌was‌ ‌also‌ ‌the‌ ‌show‌ ‌that‌ brought‌ ‌me‌ ‌a‌ ‌new‌ awareness‌ ‌of‌ ‌TS‌, ‌as‌ ‌well‌ ‌as‌ ‌many‌ other forms‌ ‌of‌ ‌dwarfism.‌ ‌Did‌ ‌you‌ ‌know‌ ‌there‌ ‌are‌ ‌over 150 ‌different‌ ‌kinds?‌ ‌I‌ ‌spent‌ ‌a‌ ‌year‌ ‌and‌ ‌a‌ ‌half‌ ‌with‌ ‌the‌ National‌ ‌Tour‌ ‌of‌ The‌ ‌Wizard‌ ‌of‌ ‌Oz‌ ‌playing‌ ‌–‌yes‌, ‌indeed‌–‌a‌ Munchkin.‌ ‌The‌ ‌role‌ ‌was‌ ‌wonderful,‌ ‌with‌ ‌opportunities‌ ‌to‌ ‌be‌ ‌‌very‌ ‌funny,‌ ‌say‌ ‌Very‌ ‌Famous‌ ‌Lines‌, ‌and‌ ‌sing‌ ‌A‌ ‌LOT.‌ ‌The‌ production‌ ‌starred‌ ‌Eartha‌ ‌Kitt‌ ‌as‌ ‌the‌ ‌Wicked‌ ‌Witch‌ ‌of‌ ‌the‌ ‌West‌ ‌and‌ ‌Mickey‌ ‌Rooney‌ ‌as‌ ‌the‌ ‌Wizard.‌ ‌We‌ ‌traveled‌ ‌all‌ ‌over‌ ‌‌the‌ ‌United‌ ‌States‌ ‌and‌ ‌Canada,‌ ‌bringing‌ ‌thousands‌ ‌of‌ ‌kids‌ ‌their‌ ‌‌first‌ ‌taste‌ ‌of‌ ‌live‌ ‌professional‌ ‌theatre.‌ ‌It‌ ‌was‌ ‌truly‌ ‌a‌ ‌dream‌ ‌job.‌ ‌The‌ ‌Munchkins‌ ‌were‌ ‌played‌ ‌by‌ ‌a‌ ‌mix‌ ‌of‌ ‌people‌ ‌with‌ ‌different‌ conditions.‌ ‌
Three‌ ‌other‌ ‌women‌ ‌and‌ ‌I‌ ‌were‌ ‌around‌ ‌the‌ ‌same‌ height‌–‌four‌ ‌foot‌ ‌seven,‌ ‌or‌ ‌slightly‌ ‌taller.‌ ‌None‌ ‌of‌ ‌the‌ ‌others‌ ‌had‌ ‌TS.‌ ‌Four‌ ‌men‌ ‌and‌ ‌one‌ ‌woman‌ ‌were‌ ‌little‌ ‌people,‌ ‌so‌ ‌they‌ were‌ ‌less‌ ‌than‌ ‌four‌ ‌feet‌ ‌tall.‌‌ Working‌ ‌and‌ ‌traveling‌ ‌with‌ ‌them‌ ‌was‌ ‌quite‌ ‌an‌ education.‌ ‌The‌ ‌woman‌–‌Leslie‌–‌has‌ ‌a‌ ‌very‌ ‌rare‌ ‌form‌ ‌of‌ ‌dwarfism‌ ‌and‌ ‌is‌ ‌incredibly‌ ‌beautiful.‌ ‌The‌ ‌audience‌ ‌would‌ literally‌ ‌gasp‌ ‌when‌ ‌she‌ ‌made‌ ‌her‌ ‌entrance‌ ‌in‌ ‌the‌ ‌show.‌ ‌We‌ ‌were‌ ‌talking‌ ‌during‌ ‌a‌ ‌break‌ ‌one‌ ‌afternoon‌, ‌and‌ ‌I‌ ‌mentioned‌ ‌that‌ ‌I‌ ‌had‌ ‌TS.‌ ‌Her‌ ‌response‌ ‌was‌ ‌something‌ ‌I’ve ‌never‌ gotten‌ ‌‌before‌ ‌or‌ ‌since.: “Oh,‌ ‌I‌ ‌thought‌ ‌so.”‌ ‌“Really?,”‌ ‌I‌ ‌said.‌ “Yes.‌ ‌I‌ ‌have‌ ‌friends‌ ‌that‌ ‌have‌ ‌Turner‌, ‌and‌ ‌you‌ ‌remind‌ ‌me‌ ‌of‌ ‌them.”‌ 
At‌ ‌that‌ ‌point‌ ‌in‌ ‌my‌ ‌life‌, ‌I‌ ‌had‌ ‌only‌ ‌met‌ ‌one‌ ‌other‌ person‌–‌a‌ ‌young‌ ‌girl‌–‌with‌ ‌TS.‌ ‌Leslie‌ ‌explained‌ ‌that‌ ‌some‌ ‌women‌ ‌with‌ ‌Turner‌ ‌are‌ ‌members‌ ‌of‌ ‌the‌ ‌Little‌ ‌People’s ‌Association‌ ‌of‌ ‌America,‌ ‌and‌ ‌she‌ ‌knew‌ ‌them‌ ‌from‌ ‌the‌ annual‌ ‌‌conventions‌ ‌that‌ ‌she‌ ‌attends.‌ ‌That‌ ‌conversation,‌ ‌and‌ ‌others‌ ‌that‌ ‌followed,‌ ‌changed‌ ‌my‌ ‌perspective‌ ‌on‌ ‌what‌ ‌it‌ ‌means ‌to‌ ‌be‌ ‌‌smaller‌ ‌than‌ ‌average.‌ Grocery‌ ‌shopping‌ ‌trips‌ ‌with‌ ‌them‌ ‌were‌ ‌a‌ ‌revelation.‌ ‌‌Imagine‌ ‌going‌ ‌into‌ ‌a‌ ‌grocery‌ ‌store‌ ‌and‌ ‌not‌ ‌being‌ ‌able‌ ‌to‌ ‌reach‌ ‌anything‌ ‌on‌ ‌the‌ ‌shelves.‌ ‌It‌ ‌was‌ ‌also‌ ‌a‌ ‌marvel‌ ‌to‌ ‌watch‌ ‌what‌ they‌ ‌had‌ ‌to‌ ‌go‌ ‌through‌ ‌to‌ ‌drive‌ ‌a‌ ‌car.‌ ‌My‌ ‌biggest‌ ‌complaint‌ ‌‌about‌ ‌being‌ ‌a‌ ‌small‌ ‌woman‌ ‌had‌ ‌been‌ ‌that‌ ‌I‌ ‌was‌ ‌not‌ ‌able‌ ‌to‌ ‌walk‌ ‌into‌ ‌a‌ ‌shoe‌ ‌store‌–‌even‌ ‌here‌ ‌in‌ ‌New‌ ‌York‌–‌and find women’s‌ size‌ ‌four‌ ‌shoes.‌ ‌Leslie‌ ‌had‌ ‌no‌ ‌choice‌ ‌but‌ ‌to‌ ‌shop‌ ‌in‌ the‌ ‌children’s‌ ‌department.‌ ‌My‌ ‌difficulties‌ ‌were‌ ‌nothing‌ ‌‌compared‌ ‌to‌ ‌hers!‌ ‌But‌ ‌we‌ ‌also‌ ‌had‌ ‌many‌ ‌experiences‌ ‌in‌ ‌common,‌ ‌which‌ ‌was‌ ‌delightful‌ ‌and‌ ‌very‌ ‌moving‌ ‌for‌ ‌me.‌ ‌What‌ ‌they‌ ‌added‌ ‌to‌ ‌the‌ ‌show,‌ ‌and‌ ‌to‌ ‌my‌ ‌life,‌ ‌was‌ ‌immeasurable.‌ My‌ ‌friends,‌ ‌family,‌ ‌coworkers‌, and‌ ‌most‌ ‌of‌ ‌all‌, my‌ ‌Christian‌ ‌faith‌ ‌have‌ ‌worked‌ ‌to‌ ‌keep‌ ‌my‌ perspective‌ ‌healthy.‌ ‌I‌ ‌am‌ ‌grateful‌ ‌and‌ ‌extremely‌ blessed.‌ 

Paying Tribute to Wendy Coates

TS affects 1 in 2,000 female births. Together, we can help!

The goal of TSF is to support research initiatives and develop educational programs to increase professional awareness and enhance medical care of those affected by TS. Early diagnosis and comprehensive treatments over the lifespan will lead to a brighter and healthier future for all individuals with TS. TSF is a registered 501( c)(3) organization incorporated in New Jersey.

Quick statistics:

  • Only 1 to 3% of fetuses with TS will survive to birth.
  • 10-20% of all first-trimester miscarriages are due to TS.
  • One in every 2,000 babies born female will be affected by TS.

Wendy’s family has set up a memorial fundraising page to support TSF and its mission. Click below to make a donation in Wendy’s honor

Wendy speaking at a TS conference

Written by Wendy Coates and her loving family. Edited by Susan Herman, TSF volunteer lead blog editor.


© Turner Syndrome Foundation 2021

2 thoughts on “My Story: A Tribute to Wendy Coates”

  1. Some people whom you meet will stay with you for a lifetime, and Wendy surely is one of them. She had a thunderous voice, quick of wit and charm, and funny as heck! She had a depth of character filled with faith, honesty and a generosity to help others with a kind and gentle heart. No wonder Wendy is missed by so many people. She was a marvelous human being and we were fortunate to have her with us as a friend and mentor. Carry on, Wendy. Until we meet again.

Leave a Reply

Shopping Cart

Discover more from Turner Syndrome Foundation

Subscribe now to keep reading and get access to the full archive.

Continue reading