A Mission to Support Other Families Impacted by TS

Thank you Heather Bienz for supporting Leaping Butterfly Ministry!

Please read Heather's testimony and mission to support other families impacted by Turner Syndrome.

From Heather ...

In May 2015, I lost my 2nd daughter, Reagan, to Turner Syndrome and delivered her still-born during my 25th week of pregnancy. Ten short months later, I lost my 3rd daughter, Hannah, to Turner Syndrome as well.

Turner Syndrome is a chromosomal disorder that occurs when all or part of one of the female X chromosomes is lost before or soon after the time of conception. It is not connected to or passed on from either parent and there is nothing a person can do to increase or decrease the chance of this happening.

I was looking for a way to process my grief, share my testimony with others and also help support other families impacted by Turner Syndrome.

I started a faith-based apparel company called Reagan Twenty Five where 25% of profits are donated to Leaping Butterfly Ministry to help sponsor women with TS to attend an annual conference and to also help purchase hearing aids for those who may have lost their hearing due to TS.

All shirts are designed by me and are inspired by my journey after losing my two daughters, Reagan and Hannah.

The goals of Reagan Twenty Five have and will always be to glorify God, to help spread His message to others through positive and uplifting messages worn on our clothing to help facilitate loving conversations about our Savior or to plant seeds in the hearts of others for God to grow, to create a community for women and mother's to know you are loved and not alone in whatever hardships you may be facing and to give back to other families impacted by Turner Syndrome - the chromosomal disorder that took the lives of my daughters, Reagan and Hannah.

By connecting with other faith-based women who share their stories with me through this ministry, it not only helps to heal my heart, but also reminds me that God provides beauty no matter how deep the pain. We are not alone in our sufferings.

I remember wishing so badly that this wasn't my life. I hated this new direction God was pushing me and I wanted things to go back to how they used to be. I knew this path, as much as I didn't want it, would shape me into a different person. The more I looked back and focused on the past, the more depressed and bitter I became. It affected my friendships, my relationships with my family and my marriage. It wasn't fair. I wanted my girls back. I wanted the "old me" back.

It wasn't until I decided to stop looking back and to start focusing on the future that I truly and fully started to trust God and His plan for me. It was then that my life started to fall back into place - and as crazy as it sounds, in ways it's even better than before.  I've noticed my relationship with God is stronger now than it's ever been, my respect, understanding and love for my husband is at a level I never knew was possible and the maturity and confidence I now have in knowing who I am and what's important in my life has given me so much peace and comfort.

In January this year, we welcome our 4th baby girl, Rayna, into the world and she’s as healthy as can be. She’s a constant reminder to us that God is ALWAYS good - in the good times and the bad.

Heather

Opportunity is on the Road in the Middle of Nowhere

When I met Debbie Browne a few years ago she told me her story and we immediately bonded. She had a daughter with Turner’s syndrome and I had a sister with Down’s syndrome. We both learned through life’s circumstances there is always joy in the journey. Taking the time to find the good in any circumstance will lead you with joy through the journey of life.

For example, on a July 4th trip my 6 month pregnant daughter and I ventured to Missouri to visit a friend dying of cancer then to Illinois to celebrate with family. We drove her new car with OnStar on our 12 hour journey to our first stop in Missouri with our dog, Bella.

Around midnight, while my daughter was driving, she hit a piece of tire debris. We didn’t think much of it and kept driving along the Interstate bubbling with enthusiasm and talking about our goals and plans in life. Several hours later, halfway to our 1st stop fear set in. SaLise’s car had less than 10,000 miles and the engine light came on and overheated. We looked around at the fields on each side of us in that pitch dark sky and realized we were “On the Road in the Middle of Nowhere”. My daughter broke down crying in fear and said, “Now what are we going to do?” Does life ever feel like you are in the middle of nowhere?

All I could do is literally laugh out loud. What seemingly sounded like a great idea was quickly turning into a very scary moment. All I knew was the 4 F’s I was taught as a child. Faith, Family, Fun and Fortune. I reminded SaLise what Faith is; the belief in something that you can’t see. We are all called for GOD’s purpose. I knew GOD had something in store for us. There is opportunity in everything no matter if it is good or bad.

It took an hour to travel a few miles to the hotel only to be turned away because they didn’t allow pets. We were in Savanna, Oklahoma where the population is 730. We went to the truck stop and talked to the clerk, he shared his story about his teenage son who recently died in a car accident. He offered to look over the car and said he knew who could fix it, Bob. It was the radiator. Bob called his friend that owns a parts store, only to find out they don’t carry new car radiators. We called the dealership and they said it would be a week. Now what? Bob and I were determined to find the opportunity. Bob found an old minivan to rent with an old fashioned typewriter rental agreement.

Lesson learned: Opportunity is on all roads…even when you are in the middle of nowhere.

Paula J. Foulk

The Life Analyst

Houston, TX

She's a Miracle!

At 19 weeks pregnant, a routine ultrasound would tell my husband and me if our 3 big girls would have a sister or brother. The tech announced it was a girl! We celebrated then my husband left for work. Later my doctor came in to speak with me with a look of concern. He told me they had seen a small cystic hygroma on the back of my baby's neck indicating several different chromosome disorders.

I left the office, hurriedly unlocked the door to my minivan, sat down and sobbed. I was full of despair, hopeless and felt utterly alone. My husband, Jeff, couldn't understand me as I sobbed between describing the doctor's concerns. I tried to calm myself down. It wasn’t something I could fix.

Later we were told she had puffy feet - a marker for certain chromosomal disorders which could develop into hydrops in other parts of her body. We decided to take the materniT21 test by extracting some of the baby's DNA from my blood.

A week seemed like an eternity as we waited for the results. I imagined the worse and mourned for a baby I didn’t even know yet. We were on vacation in New Hampshire with our family when we got the results. Her test was positive for Turner syndrome. I found myself still desperate and alone - unable to reach out.

Upon returning home to Texas, I decided I had to make a change in my attitude and relied on my faith. I reached out to my mother's group at church and also found some resources online where I put my name in for information. It wasn't long before I received an email from Debbie at Leaping Butterfly Ministries who met me for lunch to help ease my fears as she reassured me everything would be okay. She told me stories about her precious daughter, Kellie, who had TS. She knew how precious my little Clare was to me and made me feel like she was so special - a life to be treasured. My daughter, too, deserved the same all children do - love, tenderness, care, and God's grace.

Mom's prayer group passed around our request to other prayer chains and friends. Prayers saved me from the depths of sorrow as I was able to start focusing on the health of my baby. The unconditional love and prayers I received during my pregnancy and even now from friends, family and those who don't even know my family absolutely filled my heart.

Clare Frances Hynes finally arrived on November 21^st 2013, screaming and wiggling in all her glory at 5 pounds, 10 ounces. She stayed in the NICU for 1 week while we waited on results from tests on her heart and other organs. She was discharged the day before Thanksgiving and the entire Hynes family gave thanks to God in unison, like never before.

Clare has been home for 5 months now and has enriched our lives like we never could have imagined. We now can’t remember a time without her. Her infectious smile brings tears to strangers - a life invaluable.

God is now using me to reach out to prenatal moms receiving the news of a Turner syndrome diagnoses to share how Clare is our miracle!

Jessica, Mother to Clare

The Woodlands, Texas

 

Clare Frances Hynes

What’s in a Name?

There are so many wonderful things I could say about my husband however, there was one thing I had an issue within our marriage. Vinnie wasn’t very good at picking out a nickname for me – or, so I thought. You see being a “little person” I’ve had endearing nicknames like snuggles, precious rose, and, of course, my favorite…Princess.

About a month into our marriage, while I was busy cleaning and Vinnie was relaxing in the living room watching football, he called me into the room, looked at me with the warmest loving eyes and said, “I figured out a nickname I can call you.”  So excited to hear what sweet expression of love he thought of I said; “Ok what is it?” His answer.  . . “You’re my Bee”!  “You mean the insect?” I responded. “Yeah, you are like a busy bee buzzing around our house and sometimes you can even sting me if I get on your nerves. It’s perfect!”

All I could think of was that Vinnie only saw a busy, buzzing insect when he looked at me. Wow, how romantic! I did not respond to his revelation and let him call me his “Bee”. I was annoyed and thought, “Whatever!”  It wasn’t until after my heart surgery that God revealed to me that nickname could be endearing and inspirational.

While recovering from heart surgery, I read Mary Kay Ash’s biography and my ah-ha moment came when she made reference to the beauty of the Bumble Bee and how unique it is. You see the Bumble Bee, when looked at aerodynamically, is not capable of being able to fly. It took scientists numerous years to discover God’s creativity and the truth behind its ability to fly.  Mary Kay Ash quoted, “Aerodynamically, the bumble bee shouldn't be able to fly, but the bumble bee doesn't know it so it goes on flying anyway.” This hit me like a bolt of lightning. I am a BEE. 

Praise God He saw me through my heart issues, Turners syndrome, deployments as a Marine’s wife, and a divorce. And, like the miraculous Bumble Bee in Mary Kay Ash’s story, I can declare – no one told me I couldn’t make it through the struggles I have, so I just did, hand-in-hand with my precious Lord and Savior who has been there every step of the way showing me love, mercy and grace beyond what I deserve.

Would like to end by saying ladies you are all beautiful and amazing. No matter what you face in this life, good or bad, trust in God with all your heart, let His words guide you...and BE THE BEE!!!

“The Lord delights in the way of the man whose steps he has made firm; though he will stumble, he will not fall, for the Lord upholds him in his hand.   I was young but now I am old, yet I have never seen the righteous forsaken or their children begging for bread. They are always generous and lend freely; their children will be blessed. Turn from evil and do good; then you will always live securely.  For the Lord loves the just and will not forsake his faithful ones. Psalm 37:23-28.

Emily, 33 years old 
Fort Wayne, IN

 

Emily, the Bee!

 



More Blessed to Receive and To Give

Although the title of this blog seems odd you will soon discover the meaning. For if it weren’t for receiving there would be no money to give.

With growing interest in awareness for Turner syndrome I was approached by a young lady by the name of Danielle who asked me a question I could not ignore or explain away, “Have you ever thought about providing a gala to raise funds for Leaping Butterfly Ministry to do bigger and better things?” “A gala? Me?,” I exclaimed and within 2 months a gala was planned with 800 invitations mailed for a country club that only seats 200. 

I found myself in the same crisis as I did when I first published my book, ‘Loving a Leaping Butterfly’, with 2 questions plaguing my mind: What if you only sell one book? What if you sell one million books? So it was with the gala should no one support the gala. I had to leave the results to the Lord.

God, once again, proved to me that He is always in control as my questions have nothing to do with His sovereignty and for a first time gala, for a ministry and condition not many have heard of, there were 115 in attendance. Statistics state to have 30 for a first time event would have broken records yet we clearly surpassed that figure. Not only with attendance, but with giving as well.

Ten incredible woman came to my side to form a gala committee, local merchants donated over and above what we could ever expect, friends bought tickets for the tables then gave generously at the event. Laughs and smiles could be heard all over the club, as every little tiny fear of putting an event together in just weeks melted away into a time of great glory.

The event raised $32,000, expenses for the event have been paid, money is available to have a bigger event next year, and two checks were given to the Turner Syndrome Society of the United States. One check presented to them was for $4,000 for research plus $3,120 for 12 scholarships for TS women to attend the TSSUS summer conference in Jacksonville, Florida. These women have never attended a conference before in their lives.

Goals for next year are to double the gala attendance and giving as we now enjoy the status with the IRS as a Public Charity. LBM looks forward to continue bringing awareness and support to over 80,000 girls and women in the United States alone. What a testimony it has been to me, and many others, as we watch people get excited to give and then receive. So awesome to be the conduit.

Acts 20:35 says, “In everything I did, I showed you that by this kind of hard work we must help the weak, remembering the words the Lord Jesus himself said: ‘It is more blessed to give than to receive.’ ”

And, 2 Corinthians 9:7 says, “Each of you should give what you have decided in your heart to give, not reluctantly or under compulsion, for God loves a cheerful giver.”

 

Debbie Browne presents to TSSUS the 2 checks. 

Pictured from left to right: Debbie Browne, Cindy Scurlock,

and Deborah Rios. 

Linking Up With Friends

I was eleven when I found out I had Turner syndrome. I so remember that day. I was at my cousins for the summer visiting. My mom called and asked me if I was sitting down. I told her no but I can. She then proceeded to tell me that they found out what was wrong with me. She then asked if I was willing to start taking shots to help me grow. I told her yes. That's when our journey to all my doctor appointments started. I went to Michigan State University Hospital every three months, then every six months, then once a year and now I don't go anymore.

I was in denial for years about having Turner syndrome. I stopped going to doctors for it. I felt like I was the only one with this. Then one day I woke up and decided I wanted to find others with Turner syndrome. I contacted my sister Jenni and she gave me the TSSUS (Turner Syndrome Society of the United States) website. I contacted them to see if there were any support groups around where I lived. They told me there was one in Grand Rapids and one in Detroit. A wonderful lady by the name of Mary met me in Battle Creek and that's when I met someone with TS for the very first time. 

We met a couple times then she introduced me to Connie. One day Connie emailed me and told me about a wonderful lady that was starting a group in Fort Wayne, Indiana. She asked me if I would like to go with her to support starting the group. I said sure since Fort Wayne is a lot closer to me. At the meet and greet I met  a couple wonderful ladies. I met Emily and Beth who helped me through a lot of things. Then a couple months later Laura came to the group. These wonderful ladies are such great people to have as support.

I then found out from the group that there was a Turners syndrome conference every summer and the next one would be in Dallas, TX. I didn't think I was going to be able to go due to financial reasons yet I was honored to be able to go due to Debbie Browne, with Leaping Butterfly Ministry, who sponsored me. It was a great experience for me as I met so many incredible ladies. Now I can't wait to go to this year's summer conference in Jacksonville, Florida.

If you haven't found a group then call the national office at TSSUS. They will be more than happy to link you with an awesome group like mine.

Amy

46 years old 

Amy on the far right.

From a Mother's Heart

The following is written by a mother who lost her daughter with complications from Turner syndrome. Cathy was the first to reach out to me, Debbie Browne, when I lost my daughter 5 years later. I'll never forget our sweet tearful lunch, how Cathy met my aching heart where it was, then ministered to me in ways that only she could. It changed my life forever and gave me hope and insight on ways to minister for the future. Thank you, Cathy, for your gift of time and understanding. Now join me in remembering her precious daughter, Adrienne.

Adrienne’s short but full life of only 23 years was a difficult journey from day one. Yet she always managed to master such a positive outlook on life. She was an overcomer who accomplished any challenge thrown at her, especially her medical issues for which she struggled with since she was 5 weeks old.

It was her being “different” that was the hardest for her to accept. At 5 we were told that she had ADHD, but I knew it was something a little more. Adrienne had above normal intelligence however she just didn’t have appropriate behavior at all times leaving her with little to no friends. It was so sad from a mother’s perspective.

She continued in her own way to make the most out of her life by being cheery, positive, and working towards that “normal” life that she desperately sought. Being her mother it was always heart wrenching to see her try so hard and have to deal with the disappointments. Adrienne’s determination allowed her to pull herself back up and move on. I don’t think many of us, including myself, would have ever had her strength to deal with life’s cruelties as graciously as she did.

On April 2nd, 2003 is when everything changed as I discovered her in the middle of the night with a dissected aorta. I called EMS at 2:30am and they worked hard to save her until 3:30 but I knew she was gone. The doctor ordered an autopsy to confirm her condition because at the age of 23 there was no obvious reason she would be in such a critical state. They asked if she had fallen on anything for which I answered no. The report came back as a dissected aorta. Later I discovered that this can happen to those with Turner syndrome with a low survival rate.

I will always have Adrienne in my heart, thoughts, memories and prayers. I love and miss her very much and now have an understanding of what people mean by “a broken heart”.

Thank you Adrienne for 23 years of unconditional love and bringing me closer to God after your death. You will be my best friend always.

You Mother,

Cathy

Houston, TX

Beautiful Adrienne.