When She’s Good, I’m Good

By Tina Jackson

At 25, Tina Jackson was filled with optimism for the future. Newly married and excited to expand her family, she and her husband had just purchased their first home when they received the joyous news—they were expecting their first child.

Tina’s pregnancy began smoothly, but complications arose in the final weeks. A sonogram revealed potential concerns, yet Tina, ever the pragmatist, remained hopeful. “It was concerning, but I needed to see and feel it for myself,” she said. Thankfully, Tina didn’t have to wait much longer to meet her beautiful daughter. As soon as Tionna Jackson made her entrance into this world – two weeks earlier than expected – she became her mother’s world.

“She was the most gorgeous baby. She was radiant. Her skin was beautiful, just glowing. Her eyes were dark and piercing,” Tina recalled with a smile.

Knowing there were potential complications, Tina did a mental assessment of her daughter. “I consciously scanned her toes and counted them. Everything seemed okay. And I breathed a sigh of relief. She’s okay.”

“Little did I know.”

After her birth, Tionna needed to be transferred to another hospital for further testing. When Tina was able to see her daughter again a couple of days later, she was devastated by what she saw. “She appeared to be having seizures. She wasn’t eating. She was not thriving. She was actually failure to thrive,” Tina said. Tionna’s Failure to Thrive condition meant she wasn’t growing or gaining weight at the same rate of other children.

A few days later, a doctor delivered a life-altering diagnosis—Tionna had Trisomy 8 Mosaicism, a rare genetic condition. He told the new parent that Tionna most likely wouldn’t survive. But the doctor didn’t know Tina, a woman driven by an unshakeable love for her daughter and a determination to fight for her future.

From birth, Miss T [Tionna’s nickname] displayed that same bold persistence not only to live, but to live well. After 30 days in the NICU, her parents finally brought her home. Though they were in survival mode with a lot of fear and uncertainty swirling around them, Tina wanted Miss T to have her needs met in a way that would also support and foster her development.

Tina wanted to understand Miss T’s diagnosis and what she could do for her. She researched programs and interventions and started working with her to advance her development.

And Miss T took off.

Tina homeschooled Miss T and her younger sister, so they could go at their own pace. Each day was a challenge Miss T met, and she continued to grow and thrive. “We created a path for them to be well-rounded and successful,” Tina said. “I positioned myself in leadership positions, like being on the managing board for homeschoolers, on advocacy boards in our community.”

She took her girls to Disability Day at the Capitol. She found an opportunity for Miss T to be on a national task force for people with disabilities. She was the only representative in the state of Missouri to do advocacy work, and she ended up in the White House because of it.

“There are no limits we accept,” Tina said. “No ‘I can’t do it.’ Because there’s always another way.”

With her years of research and advocacy experience, Tina took what she’d learned and decided to use it to help families in similar situations, founding Kids Rare Care. The organization serves to empower parent caregivers, to reignite past passions, and redefine their identity which leads to becoming their child’s most confident advocate.

“At the hospital after your baby is born and there are issues, you don’t have time to talk with people, because it’s hard to explain what a rare disease is. No one knows what your child’s going to be capable of doing.” Tina emphasizes early intervention is crucial to lead a happy, fulfilling life like Miss T.

As for Miss T, she continued to meet every milestone. “She just rises up to it and exceeds it,” said her proud mom.

As she entered into early adulthood, Miss T got her first job at a deli, working hard and asking to have more responsibility. She became Employee of the Month and started taking her own transportation to work. Tina and her husband were starting to look at options for Miss T to live on her own, helping her gain even more independence.

And then Miss T had an unexpected medical crisis that landed her in the ICU and on life support. Tina shared the story with all those that wanted updates. Between the medical professionals, medical innovations, and Miss T’s fiery spirit, she left the ICU stronger than before and continues to advocate for those with similar stories.

Read more here.