Laina Rowley

Laina was born on April 23, 1997 and was a very sweet-spirited baby, calm and full of smiles. She made all her initial milestones with sitting up, crawling, walking and talking. She had about eight to ten words that she used. At her two-year-old doctor appointment we expressed our concern that her speech had not progressed more as had been the case with her older sister. Our pediatrician said that we needed to wait and see because often older siblings do much of the talking.

Between the ages of 2 and 3 it seemed like Laina had lost the words that she had. It also seemed like she had a hearing problem because she didn’t seem to respond a lot of the time to our speech. At our 3-year-old doctor appointment our pediatrician said that, yes, it was definitely time to see what was going on. Laina had a hearing test, MRI, and EEG.

From the ages of 3 and 4 we continue to search for a diagnosis. We initially saw three different neurologists and none of them knew with certainty what it could be. Besides her loss of speech and epileptic brain waves, Laina had no other symptoms of Rett Syndrome. For awhile we settled on the diagnosis of epileptic aphasia or Autism, but in our heart we knew that we had to keep searching.

When Laina was 4 years old we took a trip to Chicago to see a specialist. We had already done a lot of the usual DNA tests for Angelmans and Fragile X, and this, we thought, was our last hope. This particular doctor said that he would eat his shorts if it was Rett Syndrome! Well, when we got back, we decided that Rett Syndrome was the only test that we hadn’t done and that we had to at least say that we tried everything. It was quite a shock when the DNA test came back positive for Rett Syndrome. Here we had thought that the only thing that we were dealing with was a loss of speech. It was a big blow to hear about all the other symptoms of Rett Syndrome. Our doctor said she was an atypical case because she was so physically strong. But the funny thing was that right after we got her diagnosis, all of a sudden she started doing these repetitive hand movements so common to the girls with Rett. It was almost like it was the very next day! As I think back, it really hadn’t been overnight. She had stopped holding a pencil, hated any kind of fine motor play, and was constantly dropping her favorite Cookie Monster doll. We just hadn’t seen her hands do repetitive movements before.

Laina is currently 7 years old. We have to remind ourselves of that constantly because we still think of her as our sweet-spirited baby. She does not speak at all now, continues her repetitive hand movements, and walks on her toes when not in ankle foot orthotics. As frustrating as all that might be for her, she is still the happiest child we know, just happy to be with us, happy to take a drive in the car, happy to eat whatever is in sight, and happiest of all in any kind of water play. She could spend hours in a pool!

Laina’s strength has always been her physical abilities and so we have pushed very hard to keep her moving and active so as not to lose those capabilities. To date, Laina is very lucky to still be able to feed herself, walk, run, jump on the trampoline, swing, and climb up a slide. For any “normal” child, those skills are really nothing to write home about, but to have a girl with Rett Syndrome do them we realize is very lucky and we do not take those things for granted. Any type of communication or activity she performs, we celebrate with joy and hope that she will be able to maintain them. Her patience and gentle spirit has been a true gift to our family.

The Rowley Family

Howard, Sandy, Paige, and Laina