We’ve reached the end of our five week series, MD at the movies. So to go out in style, Simply Emma and I are doing things a little different. The below is a guest post from Emma. If you’d like to read my thoughts on Dare to Be Remarkable – please click HERE.
Despite there being over 60 rare types of Muscular Dystrophy, Joe and I found it almost impossible to find a movie about Muscular Dystrophy that wasn’t focused on Duchenne. Stuart: A Life Backwards being the only movie in our series that broke this trend.
So when Joe came across Dare to Be Remarkable about a young woman with Spinal Muscular Atrophy (SMA), I was intrigued.
Not only is this highlighting a different condition, but it also represents females with Muscular Dystrophy, which we found was lacking in all the movies we researched.
Joe and I also believed adding a documentary into our series would be a nice break from all the movie watching. And who doesn’t love a good documentary?
Dare to Be Remarkable gives an up-close look at the life and work of Alyssa Silva. This behind the scenes offers insights into Alyssa’s life with the muscle-wasting condition and how this impacts on family life and her many incredible academic and professional achievements.
The documentary begins with glimpses of Alyssa having her hair styled by her mum. As the camera pans around her bedroom we begin to see medical equipment including breathing machines plus a collection of personal keepsakes and photographs of friends and family.
Take away the medical machines and this bedroom is like every other young woman in her twenties. It’s only when Alyssa has finished getting ready and leaves her bedroom that we see for the first time that she is a wheelchair user.
This is followed up with her parents thinking back to the worst day of their lives as the doctor gave Alyssa’s diagnosis of SMA. Her father remembering vividly the doctor explaining that “She will succumb to the disease in maybe a year or two”.
Unless you have experienced similar life-changing news, it may be difficult to fully grasp how it can change a family dynamic. This made me think of my own parents and how they were given the devastating news, not once but twice that my sister and I both had Muscular Dystrophy.
When asked what Alyssa’s chances of survival were, the doctor said “one out of a hundred. But I believe in miracles”.
Well, either the doctor’s prognosis was completely off or miracles do in fact happen as Alyssa is now a 29 year old successful writer, blogger, campaigner and all-round philanthropist.
Dare to Be Remarkable is a short documentary, only 45 minutes in length. We see Alyssa attending hospital appointments, being with her tight-knit family life, socialising with the close group of friends and her journey throughout college whilst managing her physical limitations.
Aside from that, we learn how Alyssa’s fundraising endeavours started at a young age, which she continues to do to this day but on a much larger scale for the SMA community. This is done through her nonprofit organisation, Working on Walking. Its core aim is to raise funds, create awareness and eventually provide a cure for SMA.
It all began with Alyssa making a card for her Occupational Therapist, Marie, which at the time was a physical challenge for her. Her mum describing it like someone drawing or doing homework with weights on their arms.
Having Limb Girdle Muscular Dystrophy, I can relate to the feeling of having arms that feel extremely heavy at all times. The simplest of tasks are like a major arm workout.
It’s obvious Alyssa has and continues to achieve great things. But what I also think is very clear is the strong connection she has with her family. This is especially true for her relationship with her older brother, Adam.
They have always had a special closeness and connection, but I feel her disability and his pure love and dedication to her has made them even closer. Often putting Alyssa’s needs before his own. I found that admirable. He even made it his goal to make her the most recognisable and famous disabled person in their country.
The documentary is fairly fast-paced as it highlights the different aspects of Alyssa’s life. I must admit before watching it I was worried it may verge on inspirational porn solely because of Alyssa’s disability. But I don’t think that’s the case.
It’s a good documentary and one I’d recommend. I feel as though I can relate to her grit and determination. I also agree with her motto and lasting words that “Everything happens for a reason.” and “If I want something I’ll fight for it.” It’s a pretty good take on life, disability or no disability.
Rating out of 5
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Thank you for the recommendation guys – I found Alyssa’s documentary to be another great insight into living with disability. But more importantly how living with disability and loving support can bring out fabulous leadership and entrepreneurial qualities.
You’re welcome Leanne. Thanks so much for reading. I’m glad you found the documentary interesting. The leadership is something I’d never thought about.