My Story


Like many couples, Justin and I met in our early twenties and dated several years before he FINALLY popped the question ..(Men)

In June 2003 we were married and soon after we started a family. Before our 1st year wedding anniversary, we were holding our first daughter. Alyssa Riley was born on May 3rd, 2004.

Life was good and when Alyssa just 7 months old, we found out we were already expecting again. Sean Christopher was born on Sept. 12, 2005. Both were happy, beautiful, and healthy kids.

With my 30th Birthday creeping closer, we decided that a third baby would complete our trio. So when Sean was 9mo old we found out we were expecting number 3! My pregnancy was just as the sickness, a baby who moved a lot, and on March 27, 2007, an uncomplicated delivery welcomed Karah Elyse to the world! Like the other two, she was born w/ a full head of black hair and with dark completion... and well if you saw Justin and I, you would be wondering where that all came from as we are both very fair (pasty to be exact) and light/med brown hair!
Karah came home 1 day after delivery. I recall she was a very fussy baby...always crying! But aside from that, no issues.

At 3 weeks of age a blue knot surfaced on her nose. We soon found ourselves at Children's ENT/VMT clinic to find out it was a tumor. Luckily, it was benign, but a tumor none the less. (Med Term: Hemangioma) We were told she would most likely receive surgery between the ages of 5 and 13 at some point. We were also prepped that the tumor may grow and cover her nose and could cause airway obstruction and additional risk factors for her! This felt like the end of our world, and to have your baby's face potentially destroyed by a tumor seemed surreal.
And we thought it couldn't get worse.....

Around 3 months of age, we called her PCP and told them Karah was not really moving very much. She had also lost her ability to hold her head up and she was not grasping her hands at all. It was written off as development delay. At her 4 mo check up, I recall the Dr taking one look at her and holding her in the air and Karah was just a complete "C" shape. They immediately ordered blood work and ran tests for Prader Willie and various other disorders. Once those came back negative, we were sent to Children's Neuro Clinic where we met Dr. Brenda Wong. Within a matter of minutes we had the term, Spinal Muscular Atrophy Type 1. A blood lab was sent away and w/in a few weeks the results were in fact positive! Our lives began a whole new chapter!

Justin and I knew right away we would do what we needed for Karah to live the best life she could! We set up her surgery for Gtube/Nissen despite the fact she was still eating/nursing okay and had not failed any VS studies yet....but we wanted to do it while she was well!! We really think now, looking back this has really helped Karah sustain a better quality of life because we acted fast before she got sick. Karah is the only kiddo to ever enter Cincinnati Children's Neuro clinic who started off in the 90% weight tile. (as an SMA) Karah had no tell tale signs on SMA other than she was global hypotonic. She did fail a VSS on slight residual about 3 weeks before her Gtube/Nissen ..but passed and continued to eat thickened foods well after her Gtube placement. She eventually did fail that by age 1, but she did hold out much longer than most SMA kids.

It has not been easy year, we have had several ups and downs, and various hospital trips, but in the end ..Karah is currently a happy, very smart, beautiful 20 month old loving life w/ her brother and sister!

She is considered a strong type 1 and still has a good set of lungs on her, considering! Luckily for us, Karah does talk and we are so very thankful for that! To hear her talk is one of the best things we have ever experienced! We feel very fortunate to hear her! We treat Karah like the other kids. she does every activity her siblings do and lucky for her, she has a big sister who loves her beyond the moon....who helps her move, count, paint and color! They are the best of friends and also sisters!

We pray each day that a cure for SMA is found to help our sweet baby girl and so many other precious kids out there w/ SMA. Has anyone ever noticed these kids eyes? They tell an entire story ...and Karah is no different! Those BIG blue eyes say it all.

Karah was definitely sent to me for a reason. I am Karah's "mouth"...lucky for her I have no problem questioning Doctors, Nurses or any other person who involved w/ Karah's care and I encourage other families to do the same. Remember, Mom's/ Dad's know best! I will go to no end to help her!

We thank you for reading our story: I assume it is similar to many SMA families....Please feel free to email us and if you are a new family and need help, please let us know. We would be more than happy to answer any questions you may have about what life is like w/ an SMA kid. It is not typical, but typical for us!

The Barry Five
Justin, Danielle, Alyssa (4), Sean (3) and Karah (20 mo) SMA Type 1
Written: Dec. 2008