Background on Leta

Photo-on-2012-12-09-at-13.14-2.jpgLeta was born in 1997 in Indianapolis, Indiana  Although she remained in the PICU for 2 weeks afterwards, I had no concerns when she first came home.  She was my beautiful baby girl, but over the next few months, my reality changed dramatically.  I had to rush Leta to Riley Hospital for heart surgery, she began developing chronic pneumonias, and it became quickly apparent that she was not hitting any of her developmental milestones. Despite all this, surprisingly, no doctor was able to tell me what, if anything, was wrong.

Leta is now almost 19 years old, but I spent the first 16 years of her life without a diagnosis, other than Pervasive Developmental Delay of unknown Etiology,  and in those 16 years I traveled a medically and emotionally challenging road.  I loved Leta unconditionally, but my life with her was not an easy one. As many parents of special needs kids know, caring for my little girl was an on the job crash coarse and immersion into a world we were not trained for. It forced us to have to quickly understand that the family we were forming was going to be vastly different than others. And that we had a choice how we we were going to navigate this new path. Leta changed all of us; slowly at first, but definably as each year passed.

My goal in this blog is to document my emotional and medical journey these past 18 years, in hopes that it helps others in my situation better understand their own journey.  But I also hope this blog highlights the pure moments of joy and happiness that Leta has brought me, despite the crazy messy moments, and finally I hope this blog makes you laugh and cry in equal parts.

Leta has so many challenges; her short stature, her lung and heart disease, her inability to communicate her basic wants and needs verbally, her outrageous behavior in public and her insane antics when she doesn’t get her way. She is a whirling dervish, and a minx but she is also the love of my life….In the last few months, Children’s Hospital of Philadelphia’s Genetics Department, under Dr. Ian Krantz. has made miraculous breakthroughs in the sequencing of Leta’s DNA.  They have unraveled her genes and uncovered a rare syndrome that only 2 other children in the world share with her. Leta’s condition stems from a gene mutation that is believed to play a major role in the world of gene sequencing, because it is considered to be a “master switch” gene. Like a coxswain in a crew race that steers the boat, and coordinates the power and rhythm of the rowers. this gene tells the other genes what to do to develop properly. But Leta’s master switch gene got off course somehow. The Syndrome has finally been named The CHOPS Syndrome:
(C) cognitive,(H)heart defects,(O) obesity, (P)pulmonary, and (S) short stature.

Dr. Krantz and his team believe that this discovery has huge implications for genetic research, cancer research and beyond. If you are reading this blog, I hope you will join us in our journey of discovery for Leta and for the kids with CHOPS Syndrome that will be born tomorrow.

xo Lainey
Twitter:Lainey Moseley@laineyMoseley

Camphill Special School

The Children’s Hospital of Philadelphia


13 thoughts on “Background on Leta

  1. Sallie Jackal says:

    Lainey, I am touched so powerfully by these messages and by all things- courage, love, hope and faith, for and from you and your family. Thank you so so much for sharing this.
    Of course, I wish for you all the best as you continue on this journey.

  2. Martha Field Parrott says:

    Wow. Wow. What a lucky girl Leta is to have the ultimate advocate…her strong momma! Thank you for sharing her story. Your prose is beautiful and, most importantly, it realistically presents your courage and honesty. Nobody wants to be in this club and you know that I speak from experience. You are leading from the front! You go!!

  3. Susan says:

    Dear Lainey,
    Rahel posted a link on Facebook. I’m Holton ’80. I remember you from many moons ago….! (As this is a public webpage, feel free to drop me an email to figure out which Susan of many this is, and catch up.)Thank you for going through the painful process of writing about a difficult journey. I have several friends whose children’s challenges have defied diagnosis and will be sharing your blog with them. Blessings to you and Leta.

  4. Alex says:

    I am also Holton class of ’80 and remember you from our youth. This is a lovely blog and I admire you and your family for all you have done and are doing. You are an inspiration! Our hearts are cheering for you all!

  5. Leslie George says:

    Lainey, Your Leta will be the Henrietta Lacks for her disorder. I’m glad you can find joy in your struggles and know all your work with Leta will make life better for other Letas in the future.

  6. Sharon Fuller Thoma says:


    Your story touched my heart and I am in awe at your strength and courage. Life is so precious and so short. God is amazing and I am inspired by your words. I am so glad I am on FB and came across Rahel’s posting. I have such great memories of our time together at Holton. It seems like a lifetime ago but then again like yesterday. You and your family are in my prayers. Keep the faith 🙂

  7. Nan Leake says:

    Lainey, I’m in awe. Thanks to our dear Di for reconnecting me to you and Leta, xxoo nan

  8. Jane Boulden says:

    Lainey- I enjoyed catching up on Leta. Your words capture so many of my emotions and experiences of life with Cary. I cannot believe Cary and Leta are now 16.

    I’d like to catch up with you sometime over a coffee.

    Btw, Emma is a first year wahoo – loving life on the grounds and playing club lax.

    Email me when you have a chance.


  9. Linda Pimpey says:

    You are so fortunate to have gotten a diagnosis. I often say, a diagnosis changes nothing but it sure would be nice to know where the genes went wrong for my daughter.

  10. D. Williams Carpenter says:

    Your challenge in life is being rewarded with the joy you have daily with Leta. I wish you all the best. I was a “nanny/sitter” for a Charles, Livingston and Lainey Webb in their young years while they were spending time with their parents during the summer(s) in Hot Springs, Va. (near The Homestead ). I do not know if you are the same “Lainey Webb” from Wash. D.C. but if so, I know why you are driven to be such a wonderful, caring mother. You were full of energy, love and hugs as a child.

    Best to you and family,
    D. Williams Carpenter

  11. Jennifer Ott says:

    Leta has definately touched my life and I’m glad to have known her and you, Lainey. My support is with you and your amazing family.

  12. Robin says:

    I am utterly fascinated by Leta’s story that I have just learned about on Your family is awe inspiring and so full of love. I wish you and your beautiful family all the best.

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