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My Spinraza Journey

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…

The Christmas Tree in the Bay Window

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…

Taking a Deep Breath

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.

A Long Time Ago …

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…

Merry Flu Season

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.

Refined by Fire

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 the Word

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…

Prepping for the Winter

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…

Bright and Positive

Ella again had a Spinraza (nusinersen) injection last week. As per the regular routine, she had a physical therapy (PT) assessment using the Hammersmith Motor Function Test. The last time she did this test, she improved her score by four points, which…