Hope for Hannah
On June 15, 2015, our world changed forever. Our beautiful baby girl, Hannah Mackenzie, then 15 months old, was diagnosed with Spinal Muscular Atrophy (SMA) Type 2.
As first time parents, we were learning our way, but we had been concerned about her fatigue and need to lie down during daycare when other kids were playing. We worried when we saw that she struggled to pull herself up to stand at 10 months. We were terrified as we watched her seem to slow down when she walked with her push toy. We waited, patiently, thinking that she was just taking more time to walk. But the fear grew in our minds, and we pushed our Pediatrician to refer us to see a Neurologist. Six days later, Hannah’s genetic testing results came back, and we learned that she had SMA.
The floor dropped out from under us, and life itself seemed to stop. Ryan and I have battled our own chronic medical problems, but nothing could have prepared us for this. There are no words that can express the pain of learning that your child has a progressive neurological disease, one that can take away the ability to run, walk, stand, eat, talk, and even breathe. SMA has taken the lives of many children and adults, and we were terrified that we could lose her.
Then, we found Cure SMA and the SMA community, and we were lucky enough to see an SMA specialist who got Hannah a spot in a clinical trial. We plunged forward without looking back, ready to face whatever we had to so that we could give Hannah a chance, a chance for a better life. Just shy of 18 months old, Hannah had her first visit in the clinical trial.
She has been unbelievably brave over the last year, receiving pokes and prods and endless testing and hours of monitoring. She greets the team with a smile and wave each time, and she amazes us every single time with her strength and resilience. During her treatments, she receives conscious sedation, and this is never easy for us as parents. We will never forget the first treatment - I grabbed onto Ryan for dear life as they gave Hannah medicine to make her sleepy and sent us away so they could start her procedure. We have cried and held each other close so much this last year. And through it all, Hannah has been our superhero, and she is only 2 years old.
Since she started in the clinical trial, we have watched Hannah become stronger and stronger. She has regained the ability to crawl up the stairs, her energy has increased dramatically, and she has gained new skills - she started letting go and standing without support. First, it was a second or two, then 12 seconds, then 45 seconds, then 9 minutes, and more and more and more. We cheered her on and wept with each new milestone. Recently, she started using forearm crutches to walk, and one day she picked them up and walked across the living room, making it look easy when it was anything but. And then, on the 3rd day of SMA Awareness Month, on August 3, 2016, Hannah took her first independent steps. We wept tears of joy, seeing our baby girl take her first steps, something we didn’t know we would ever see. Her excitement at her accomplishment was the best part of all. She said, “Hannah did steps!”.
Nusinersin, the drug which is being studied in the trial that Hannah has been participating in, is going to be submitted to the FDA very soon, and we are so excited. The first FDA-approved treatment for SMA is not years away, but months away now. And so many more treatments are in the pipeline - there are now 18 programs in the SMA pipeline, with 6 in clinical trials. We are on the verge of new breakthroughs toward a treatment and cure for SMA.
So much hard work goes into these treatments - hard work by scientists, physicians, nurses, physical and occupational therapists, families and most of all our children, and now hope is really here.
Our fight is a daily one, navigating the world with braces, a walker, a handicapped plate - things that you don’t foresee or think about when you get pregnant and dream about your life together raising a child. Walking out of the house takes great courage some days, as people stare or say things that hurt and leave us feeling saddened and exhausted.
But every day we rise up, and we revel in the joy that it is to be with our beautiful Hannah. She is so bright and bubbly and full of laughter and curiosity. She is probably smarter than both of us combined, and her empathy and kindness blow me away every day.
We will fight for Hannah every day for the rest of our lives, until there is no more SMA, no more disease that robs our children of their most basic abilities. We will fight to hell and back for her, to the ends of the earth, to give her the best life possible.
Please consider donating to our fundraiser for the Walk-n-Roll or the Rock ’n’ Roll half marathon. The dollars raised go to Cure SMA, an organization which has helped fund this incredibly important life-changing research that will stop SMA. We are so grateful for your support.
We will never, ever, stop fighting for Hannah. Thank you for supporting our family and fighting with us, and most of all for believing in Hannah.
Ryan and Allison Gray