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. 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.
But then there was hope. We were lucky, and Hannah got a spot in a clinical trial for Spinraza, the medication which she has been on since 18 months old. Hannah gets this medication, Spinraza, every 4 months via lumbar puncture (spinal tap). She is 5 years old, and she has had 15 spinal taps. During her treatments, she receives conscious sedation (anesthesia), 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. And yet, Hannah takes this in stride. She is brave and courageous through it all.
Since starting Spinraza, Hannah has become stronger and stronger. She regained energy, she started standing independently, she took her first steps on 8/3/16 at just under 2.5 years old. She was able to stand up on her own without help. She started riding a pedal bike. Now she swims and rock climbs. This year, we got a seated scooter for her for the long hallways in Kindergarten, but she is as mobile as ever, walking all over on her own or with forearm crutches. And yet, she falls easily and tires; sometimes she has pain in her legs and has to miss activities because of fatigue.
Hannah is a warrior. She does weekly PT, weekly hippotherapy with horses, and swim, all to keep her muscles strong and keep her body as healthy as possible. She wants to run and jump just like her hero, Wonder Woman. We know that with her courage and determination, and with the help of her amazing physical and occupational therapists that she will do all that she wants to do in this life. She just started a dance class, and she is loving it.
We hope that someday soon, Hannah will be able to take other medications which will help her nerves and muscles without the need for lifelong spinal taps. Gene therapy was just approved by the FDA last year for the youngest children with SMA, and we hope Hannah will be able to get this medication soon. There are many more treatments coming too. We are hearing about new breakthroughs which might finally cure 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. 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. Many people do not understand the importance of inclusion and appreciating that people who move differently are differently abled, not disabled.
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 smarter than both of us combined, and her empathy and kindness are infinite.
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 Rock ’n’ Roll half marathon in Denver in October. The dollars raised go to Cure SMA, an organization which has helped fund this incredibly important life-changing research which 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 for fighting with us, and most of all for believing in Hannah.
Ryan and Allison Gray