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.