Alumni Spotlight: Joanna Reiso Browning ’94
Alumna Joanna Browning ’94 has a story and while her story is hard and heartbreaking, the ending is beautiful.
Joanna and her husband, Garrett, welcomed their second son, Jacob, in July of 2014. Six months after his birth, Jacob was diagnosed with a rare genetic disease, Myotubular Myopathy (MTM). Only one in 50,000 male babies have MTM and Jacob’s was the first case their hospital had seen. “Jacob’s challenges were evident at birth: low muscle tone, difficulty swallowing, and needing respiratory support,” Joanna said. “We lived in the NICU with him for three and a half months. Even when we took him home, we didn’t have a diagnosis.”
The difficulties continued. “Our journey has had so many levels and turns,” Joanna said. “At first, following the diagnosis, we were in survival mode, learning how to care for this vulnerable child to give him the best chance in life.” In addition to caring for Jacob, the couple also had their son Sam who was four at the time.
Garrett started researching MTM and found a mother in Florida who had lost a son to the disease. She and her husband, a former NFL player, had started a platform to raise funds toward finding a cure for MTM. Garrett also learned about a new, cutting edge gene replacement therapy about to begin. “He began to contact researchers, doctors and pharmaceutical companies, anything he could do to advocate for Jacob to get involved in the study,” Joanna said.
Even though he was sick, Jacob’s kind, sweet spirit shone through. “Anyone who met Jacob, even for a moment, instantly fell in love with him! We called it the ‘Jacob Vortex’. Once you encountered him, you wanted to be around him all the time,” Joanna said. “Jacob was such a hard worker, he rose to any challenge set before him and always impressed his therapists and teachers with his determination. He was full of life and love. He always wanted people around him to be happy. He loved to laugh! We learned so much from him; he changed our world in the best possible way.”
The Brownings were eventually led to Sick Kids Hospital in Toronto and Dr. James Dowling, who has dedicated his career to MTM. “To be exposed to Dr. Dowling and his knowledge was a God-given experience,” Joanna said. “We traveled to Toronto with Jacob every three months for over a year and were very close to being part of a trial that was set to begin. It was to be the first human trial for gene replacement therapy. Our last visit was at the beginning of November 2017, we were looking for apartments and anticipating our next visit for dosing.”
Unfortunately, the Brownings lost Jacob unexpectedly on November 17, 2017, due to a complication from MTM. “We were obviously devastated, and the fact that we felt so close to a cure was another level of despair,” Joanna said. “However, Garrett and I made a conscious choice very early on that we would continue to choose joy—that Jacob was a gift to be celebrated. Even though our time with him may have been short in years, those years were filled with LOVE!
“He had an enormous impact on our world and we would continue to carry on his message of love and joy.”
Despite their grief, the Brownings realized their work with MTM wasn’t finished. “Beautiful things can be birthed out of the most unexpected places,” Joanna explained. “Throughout Jacob’s life, I got to witness true unconditional love in so many ways. I witnessed a father fighting for the life of his son; it was the most beautiful thing I have ever seen and my love and respect for my husband grew in ways I didn’t think were possible. I witnessed my older son, Sam, just love his brother, not seeing his limitations or disability, but simply his brother. Sam was so proud of Jacob, to this day he remains his most precious treasure. And I witnessed Jacob’s beautiful soul, a boy who wouldn’t give up, who knew not of any challenges before him. All he knew was total raw and unconditional love from everyone he met.”
The Brownings decided to continue the fight against MTM. They started “Joining For Jacob,” a not-for-profit foundation to honor their son and help find a cure for his peers. The family also honors Jacob with “Joy For Jacob” events. “Last year we celebrated Jacob’s birthday by sharing with others the gift that he is to us,” Joanna said. “We spent the day at the St. Louis Zoo doing random acts of kindness for others. We raised money by selling ‘Joy for Jacob’ t-shirts and through donations. We had about 45 families join us in ‘spreading joy’ to others that day by buying lunches, giving away gift cards or just making a child’s day with a new stuffed animal. Jacob LOVED animals and we thought the zoo would be a perfect place to spread joy! We had ‘Joy for Jacob’ cards to tell a little bit about Jacob and why they were receiving their gift and encouraging them to pass their act of kindness on to others.”
To learn more about Jacob, the research funded by “Joining For Jacob”, or to purchase a t-shirt, please visit www.joiningforjacob.org.
“Throughout Jacob’s life we chose joy, and Garrett and I made choices each day to celebrate his life and to remain in faith,” said Joanna. “And similarly, in grieving his loss, we are continuing to make those same choices—joy over sorrow, hope over despair, celebration over mourning!”
This alumni spotlight was originally featured in the March 2019 issue of our alumni newsletter, Wildcat Tracks.