Background on Leta

Photo-on-2012-12-09-at-13.14-2.jpgLeta was born in 1997 in Indianapolis.  She was born at 5 lbs 4oz, but although she remained in the PICU for 2 weeks afterwards, we had no concerns when she came home.  Over the next few months, though,  things changed dramatically.  Leta was rushed to Riley Hospital for heart surgery, had multiple bouts of pneumonia and was not hitting any of her developmental milestones.  Besides having lung disease, doctors could not tell us what if anything was wrong with her.

We spent the last 16 years without a diagnosis, other than Pervasive Developmental Delay of unknown Etiology,  and in those 16 years we traveled a medically and emotionally challenging road.  We loved Leta unconditionally, but our life with leta has not been easy for my kids, my marriage, or my sanity.

My goal in this blog is to document my emotional and medical journey these past 16 years, in hopes that it helps others in my situation, but also, that the blog illustrates the pure moments of joy and happiness that could never have happened without little Leta in my life.

She is a whirling dervish, a minx, a thief, 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.

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 all the kids that will be born tomorrow.

xo Lainey

lwmoseley@comcast.net

 

Camphill Special School

The Children’s Hospital of Philadelphia

NPR

https://twitter.com/laineymoseley

10 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:

    Lainey,
    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:

    Lainey-

    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.

    Jane

  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:

    Lainey,
    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

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