When Danny and Andrea Passow found out their son, Jackson, was diagnosed with GM1 Gangliosidosis, their hearts sunk.
They were headed down a dark, all-too-familiar path. With a support system in place, though, they also knew this was a battle they weren’t going to have to fight alone.
Jackson, who was born on Aug. 6, 2017, inherited the same disease his sister, Ava, had when she passed away at three years old in December of 2012.
“We were in shock — crushed and devastated,” Andrea said. “We were told it wasn’t going to happen again. But after we found out, we decided what the best options would be, and quickly got donors lined up.
“It was a very fast process to get things going.”
GM1 Gangliosidosis is an inherited disorder that progressively destroys nerve cells (neurons) in the brain and spinal cord.
Danny, a Manson Northwest Webster graduate, and Andrea, who is a St. Edmond graduate, leaned heavily on family and friends to help them and their now 11-year-old daughter, Ella, through the hard times.
“I can’t speak enough about our family and friends, who have been there since the beginning,” Andrea said. “They would take Ella when we were with Jackson, or just do whatever we needed to help out in anyway possible.”
On Sept. 18, 2017, Jackson was ready to undergo a bone marrow transplant. Two days later, this hard-core Iowa Hawkeye family suddenly found a soft spot for the Minnesota Golden Gophers.
“Two days after Jackson’s transplant, (Minnesota head coach) P.J. Fleck and his wife, Heather, visited,” Andrea said. “Of course being Iowa fans, we decorated Jackson’s room in Hawkeye gear. There was black and gold everywhere. P.J. came in with his eyes covered, worried about what he would see.
“Ever since then, we’ve been close friends.”
Jackson was discharged in February of 2018, and after that, the family would visit the University of Minnesota Masonic Children’s Hospital in Minneapolis every six months. This past July, the family was told they wouldn’t have to return for a year.
“Our family love and support has been a big help for us,” Danny said. “If we need anything, they are right there to lend a hand. They are more than happy to help.”
Through the numerous trips to Minneapolis, the Passows were able to share some time with the Golden Gophers and get a taste of the tailgate atmosphere.
“We did some tailgating with the team on Jackson’s two-year anniversary for the ‘Row the Boat’ Tailgate Party,” Andrea said. “It helped the family and children break out of the hospital and enjoy some time outdoors.
“They would host big events for siblings, and that just meant the world to Ella. I can’t put into words how much that meant to Ella, and for us to not have to think about the daily stuff.”
The budding friendship with the Flecks and the state of Minnesota grew, and eventually, would lead to much more. The family became friends with Minnesota Vikings tight end Kyle Rudolph and University of Minnesota golfer Emma Carpenter.
“Kyle Rudolph and Emma Carpenter both visited us, and we became great friends,” Andrea said. “Jackson feel asleep one night in Kyle’s arms.
“It was just a bond that brought us all together.”
On Oct. 5, that bond was solidified when Jackson was named the Kid Captain for the Gophers’ game against Illinois inside TCF Bank Stadium.
The Passows, along with Danny and Andrea’s parents and four of their siblings, were there to show support for Jackson.
At first it was a little overwhelming, the Passows admitted, but it was a fun process to see the ins and outs of the stadium.
“It was nerve-racking at first, going through security and everything else,” Andrea said. “They took us down through the tunnel, and it was just a huge place. It was an overwhelming, yet an amazing experience.
“Once we were on the field, we were told don’t look at the Jumbotron, just look straight ahead. Danny, who usually doesn’t get nervous, said it was the most anxious he has ever been.”
Danny, a die-hard Hawkeye fan, enjoyed the atmosphere and all the support that his son received.
“It was overwhelming to have 50,000 people clapping for your family,” Danny said. “It was a great time. I’m still a Hawkeye fan, but I have a soft spot for the Gophers now.”
Being there with loved ones made the experience well worth it.
“It was an amazing time with our family, supporting Jackson,” Andrea said. “Without our family, we wouldn’t be where we are. We were away for 151 days, and without them, I would have been lost and worried.
“My work (preschool associate at St. Edmond) and Danny’s work have been amazing. If something came up and we had to be in Minneapolis, we were able to do that through everyone’s help.”
Visiting U.S. Bank Stadium and Rudolph’s home turf was a visit Ella won’t soon forget.
“We did get to meet four-time cancer survivor Casey O’Brien, who is the place holder for the Gophers. That was great to see him, and was it awesome to have people support my family. We got to watch the game, and we won.
“It was awesome to see the Vikings’ stadium. I got to meet Kyle and his family. I’m a big Vikings fan, so it was a dream come true.”
The next trip for the family is this weekend, when they head to Dallas to see the Vikings play the Cowboys thanks to the Quinn Madeline Foundation — an organization that grants wishes to children who are diagnosed with illnesses under three years of age.