The healing process is long and arduous. Positioning is critical, medications are imperative, and positive energy is vital. Spine surgery requires bravery, determination, and stamina. Ella returned home from spine surgery six days after she was admitted to Lurie Children’s…
For the longest time, I thought New Year’s resolutions were one of the corniest, hokiest, most pointless traditions in our culture. Every year, people set unrealistic goals that they never follow through with, which only leaves everyone feeling disappointed and apathetic by the time March or April rolls…
Spinraza. This word elicits a different emotion for each person. Much like SMA itself, everyone’s experience with this medical treatment is different. For some, it has been life-changing in a good way; for others, in a not-so-good way due to suffering caused by the risks associated with it. Others are still…
Growing up, there was a big bay window in the house where I lived. It overlooked the front yard and gave a great view of the surrounding houses and outside world. The sunlight shone through it, making anyone who sat next to it feel warm and happy. To…
One of the consequences of having SMA is scoliosis. The increasing curvature of the spine contorts the body and compromises lung function. A thoracic-sacral-lumbar orthosis (TSLO) helps with supporting the body, but it doesn’t do anything to correct the curvature of the spine.
I was maybe 4 or 5 years old the first time I saw the original “Star Wars” trilogy. It was a VHS set, and I still remember the old-fashioned covers that featured characters like Yoda and Darth Vader. For those of you ultra-millennials out there, VHS tapes are…
This morning, I woke up to a most unusual greeting from my mother. “Good morning. I want you to stay out of Massachusetts,” she said while removing the BiPAP from my nose. Typically, she knows not to speak to me when I first wake up in the morning.
At 10 months old, I was diagnosed with spinal muscular atrophy (SMA) type II, a recessive genetic neuromuscular disease. It increasingly robs me of strength and affects my spinal cord’s motor nerve cells. As the number one genetic cause of infant death, and with an average life expectancy of about…
Spreading awareness about SMA has been one of our goals since we first were given Ella’s diagnosis in 2011. We immediately started a blog for our friends and family, so that important updates could be disseminated in one place rather than having to repeat…
As Christmas lurks around the corner and everyone is hustling and bustling for last-minute gift deals, I’m reminded that this time of year requires extra preparation for myself as well. The holidays are great, but it’s the weather that accompanies this season that I have to handle with…
