3/1/2016 by Share Your Story

Genetic Growth Issue: Medical innovation delivers treatment for real-life Thumbelina

Due to a genetic growth issue, Ashley’s doctors predicted she'd grow no taller than the pint-sized Thumbelina. Then, medical innovation delivered a miracle.


The famed rabbit of the tale Alice in Wonderland, egged on Alice,” Eat me and you will get taller.” If it had only been that easy for my daughter Ashley – eating a fantasyland cookie and she could overcome her genetic growth issue. Instead, at almost age three it was clear that Ashley’s extreme short stature would require a miracle. Repeatedly and painfully multiple medical experts told me that she would grow no taller than another fairytale heroine, the pint-sized Thumbelina.

Ashley Shaff MontageI kept saying no. This cannot be true. There must be a miracle somewhere for Ashley and also for me. With Ashley basically staying the size of a one-year-old infant the rest of her life, I couldn’t imagine how challenging life would be, how I would be able to continue to work full time, and care for her older sister.

Just before Ashley’s 3rd birthday, her miracle arrived. It came in the form of a new to market and first of its kind synthetic growth hormone. The great news – the drug manufacturer in it’s effort to establish market prominence- offered the $3,000 per month injectable growth hormone at no cost for the first three months. This was the answer to the most incredible dream that filled my heart and fueled my hopes.  Actually, Ashley received two miracles – access to this brand new innovative therapeutic to help her to reach her height potential, and relief from paying for the drug.

Then, we received a third miracle when our healthcare insurance provider was able to make the right decision to provide full cost coverage for Ashley growth hormone therapy. And, even with switching to a few different insurance providers, after 16 years on growth hormone therapy, Ashley reached her full adult height of 4 feet 6 inches at age 18.

As I prepare to celebrate Ashley’s 33rd birthday on March 1 and count all the gratitude moments that have defined her life, and mine – the one that is stellar, the one that still brings me to tears is the fact that because of this incredible innovation my daughter is not Thumbelina. She is Ashley – strong and amazing, capable and loving. I am so grateful that like me, there were and there are scientists and drug innovators that dream the almost impossible. When Ashley blows out her birthday cake candles this year – our wish is that more people can benefit from drug development and the innovators that make patient’s dreams come true.

Peggy is the mother of four daughters, Rachel, 36, Ashley, 33, Brittany, 28, and Taylor, 19, and nana to 4-year-old twin grandsons, Nate & Jack. While raising her children, she has continually worked full time, (sometimes from Ashley’s hospital bedside), earned her MBA, spent the last 15 years as a part-time college professor teaching Healthcare Business courses, and most importantly — never gave up on helping Ashley enjoy life.


Spread the Word:

You'll receive updates about new resources, patient stories and insights, advocacy work, and alerts about patient-support events.