Elizabeth and Brian Veit live in Jefferson City, Mo., with their two children—Benjamin, who is 6 years old, and Kate, who is 5 years old. By all accounts, Elizabeth’s second pregnancy was “completely normal,” and the health and vitality of her first child created little reason for concern. But when Elizbeth and Brian started noticing differences in their kids’ developmental milestones, the worry set in and they sought out answers.
After multiple tests led to no more information, the Veits finally found a doctor who suggested that Kate might have spinal muscular atrophy (SMA). If she did, the doctor noted, her life span would be limited, not much more than her teenage years. “We were devastated,” Elizabeth remembered. Just a few months after Kate’s first birthday, she was diagnosed with SMA Type 2.
After Kate was officially diagnosed with SMA in 2015, Brian recalls receiving an email from another parent in the SMA community. It read, “After you get past the initial shock of this news, life and your view of the challenges to come will evolve and improve.” Today, Brian agrees.
The journey before and after diagnosis is an emotional rollercoaster that families of SMA face. “At first it was somewhat of a mourning process. You initially mourn losing what you thought your child’s life would be. Then, overtime and after realizing that you are not alone in this fight, you start to see and focus on the positives and how you can improve your child’s life,” said Brian. Kate—referred to as Kate the Great, a nickname given by her big brother, Ben—began receiving treatment for SMA in 2017 and can get around pretty well on her own.
Elizabeth and Brian are also active members in the SMA community. They first participated in the Kansas City Walk-n-Roll in 2016, an annual tradition they carry on today with a team—dubbed Kate’s Army—comprised of supportive family and friends. When Kate was 3 years old, the Veits ventured to their first Annual SMA conference.
“She loved showing off her steps using her walker and swimming at the pool. We were touched by the amount of people who had lost loved ones to SMA but were still fighting to fundraise for the disease. It was also great to meet families who were going through similar situations as we were, and see how the siblings were always involved,” said Elizabeth.
Now that Kate is older, the Veits are looking forward to attending the 2020 Annual SMA Conference at Disney World. They’re excited for Kate to connect with other kids her age. SMA is a rare disease and yet “being part of the SMA community means you are not alone,” said Elizabeth. The Veits find comfort in knowing they have a strong network of supportive people who can guide them through difficult situations and answer questions about navigating SMA.