Newborns in Alberta now have the opportunity to be screened for spinal muscular atrophy (SMA), thanks largely to the efforts of Jessica Janzen Olstad – a woman who vowed to ensure no other family would experience what she and her husband had: watching their own child knowing that every breath might be their last.
Jessica Janzen Olstad is the co-founder of the Love for Lewiston charity, which supports those affected by SMA and their families, and a motivational speaker whose talks emphasize the importance of newborn screening and encourage people to find joy even in the toughest of circumstances. More about her personal and professional journey can be found on calgaryski.net.
Pain as a Catalyst for Change
Jessica met her husband Ronnie in 2009 when they both worked at Jugo Juice. In 2013, they got engaged, and two years later, they welcomed their daughter, Swayzie Grace.
In May 2016, Jessica and Ronnie’s son, Lewiston, was born. Six weeks after his birth, he began limping. Doctors confirmed that he had Type 1 SMA – a rare neuro-muscular disease in which the motor neurons in the spinal cord gradually die, leading to the loss of muscle control and eventually, the ability to breathe. SMA is the most common genetic cause of death in children.
Without treatment, children with Type 1 SMA (manifesting before six months of age) do not live past two years. Those with Type 2 SMA (6–18 months) can sit unsupported but are unable to stand or walk. Type 3 SMA (manifesting after 18 months) progresses slowly, and children may walk for a while. Type 4 SMA (manifesting in adults over 20 years old) usually does not shorten life expectancy.
People with SMA, regardless of age or disease form, need urgent treatment and rehabilitation. The effectiveness of therapy depends on how early the diagnosis is made and treatment begins, as once motor neurons die, they cannot be restored.
Doctors told Jessica and Ronnie that Lewiston would live less than a year. Sadly, this was true: he passed away just three days before his 6-month birthday at the Rotary Flames House hospice. Jessica and Ronnie realized that if the screening had been done earlier, their son could have received treatment in time to survive, as early diagnosis increases survival rates. In honor of their son’s memory, the family channeled their grief into helping others by raising awareness and funding for screenings and treatments through Love for Lewiston.
Seven weeks before Lewiston’s first birthday, the couple gathered their friends and family and held the first official event for Love for Lewiston on May 25, 2017. Rather than a somber affair, it was a celebration of Lewiston’s short but impactful life. That night, they raised over $42,000. The foundation was officially registered soon after.
In order to fully devote herself to the foundation and motivational speaking, Jessica quit her corporate job just four days before turning 30.
The Work of the Foundation
The foundation raises awareness of SMA, brings joy, spreads love, and most importantly, collects funds to assist local families with SMA and to support treatment and research for cures.
Each year, the foundation holds three major fundraising events – Lewiston’s Birthday, Ride the Roof (a cycling event on stationary bikes set up on a building’s rooftop), and a golf tournament.
Since 2017, the foundation has partnered with Alberta Children’s Hospital to conduct screenings and provide necessary treatments for newborns. The foundation also supports the Calgary Children’s Hospice, Rotary Flames House, located near Alberta Children’s Hospital, which offers round-the-clock care for children with complex or life-limiting conditions.
On the third year of the annual fundraising event, due to the COVID-19 pandemic, the event was held online. At the time, Jessica and Ronnie were in self-isolation with their five-year-old daughter and one-year-old son.
Since May 2017 until early 2023, the foundation has raised nearly $2 million, of which over $600,000 was directly donated to Alberta Children’s Hospital for newborn screening, laser interstitial thermal therapy (LITT), and other treatments.
In May 2020, Jessica released Bring the Joy, a book in which she shares her life experiences, particularly about how she followed the promptings of her heart to find true and lasting joy. Jessica started writing the book before she was pregnant with Lewiston. Initially, it was supposed to be a beautiful love story between her and Ronnie, but after the family’s tragic loss, the plot changed.
Jessica described her journey from the bliss of her dramatic, romantic saga with her husband to the devastating sorrow, and then to the triumph of her career path. The honest and inspiring stories encourage others to start looking for ways to bring more joy into their lives and the lives of those around them.
Bring the Joy was released during the COVID-19 pandemic, a time when many families were losing loved ones, making Jessica’s message resonate with many. The book offers real advice on coping with grief – from visiting a therapist, expressing feelings, exercising, eating healthily, taking a shower, to simply making the bed.
Jessica has repeatedly shared that after the death of her son, she struggled with depression and suicidal thoughts, feeling as though she was stuck in darkness and loneliness, even in a room full of people. However, these moments inspired her to share her knowledge about how, even amid chaos, uncertainty, and death, joy still exists.
Screening Program
For several years, Jessica has spoken publicly across North America, urging people to join the fight against SMA and support one another. Her talks helped lead to the introduction of SMA screening programs in Alberta, Manitoba, and Quebec in July 2021, and in 2022, it became an official part of newborn screening in Alberta.
Alberta became the second Canadian province to implement such screening, following Ontario, which launched a pilot SMA screening program in January 2020, and officially added it to the newborn screening package in July 2021.
The screening is done through a blood sample taken from the baby’s heel. Children with SMA can be treated before symptoms appear. The earlier the diagnosis, the more opportunities there are for treatment and supportive therapy.
Additionally, in January of that same year, Alberta announced it would fund Zolgensma – a gene replacement therapy costing $2.8 million. Alberta also provides coverage for Spinraza – a gene-modifying treatment.
Furthermore, Jessica was awarded the Doc Seaman – Generosity of Spirit Award in 2021, won “Best Documentary Film” at the Okotoks 2022 Film Festival, and received the Dr. Katie Mander’s Courage to Inspire Award. In 2022, Jessica was named one of the top 40 under 40 in Calgary by Avenue Calgary magazine.