Makayla's Story

Photo by Ryman Tolentino @ Voidline Productions

On December 2, 2010, Makayla came flying into the world, just five short minutes before her twin brother, Austin.  They were six weeks premature, and spent a short 16 days in the NICU.  Just 3 pounds 9 ounces, Makayla thrived in the NICU and was ready to come home a full 24 hours before her "big", 4 pound 9 ounce, little brother.

Once we had our beautiful babies home, we quickly realized how different things were going to be with two premature babies needing constant care and attention.  However, within a few short months we were finally finding our groove and paving our new routine.

But, before we could get too settled, at just two months old, we noticed that Makayla's eyes were bouncing around a lot.  It looked as though she was watching a tennis match at all times.  Her eyes never stopped moving.  During my pregnancy, I had watched MTV's True Life: I'm An Albino and I learned about Nystagmus, which is a rapid and constant movement of the eyes, that is commonly found in people with albinism.  I immediately recognized Makayla's jerky eye movements as Nystgamus and took to Dr. Google, where I learned that Nystagmus is not specific to albinism, and can be caused by many different eye conditions, including blindness, or neurological conditions, or even a symptom of something as frightening as a brain tumor.

Scared to death, we immediately took her to the pediatrician who confirmed her Nystagmus diagnosis and referred us to an ophthalmologist and a neurologist.  An MRI confirmed that her Nystagmus was not caused by anything neurological or by a brain tumor. 

Over the next year and a half we saw six different doctors and were followed by a Vision Therapist and Physical Therapist provided by our local school district's Early Intervention services.  In April 2012, we took Makayla to Ohio to see an ophthalmologist at Akron Children's Hospital, Dr. Richard Hertle, who researches and specializes in the diagnosis and treatment of Nystagmus.  He stated that Makayla has a mild transillumination and a lack of pigment in her retina, which is the cause of her Nystagmus, and is normally found in someone with albinism.  Given Makayla's fair skin, hair and eyes, this is not the first time we have been told that she may be Albino.  We are currently waiting for genetic testing.

With the help of Dr. Hertle, we have a plan to treat Makayla; however, we are continuing to research and gather additional information on Nystagmus and albinism to arm ourselves with as much knowledge as possible.


  1. I hope you still check this! My son is 4 months old and has nystagmus. The pediatric ophthalmologist thinks the cause may be albinism but he only has a slight lack of pigment. He is very blonde, blue eyed and fair but that is exactly how I looked and still do (northern European blood). Please contact me. We are so scared and I would really love to talk to someone who has been through this.

  2. Hello! This blog has been very helpful as I go through testing with my own 15 month old daughter. I am wondering how Makayla is doing today. Anything you wish you knew when you were going through to get your diagnosis that you know now? We are doing genetic testing and probably an MRI shortly to see if its OA or OCA.