As the sun drops below the horizon and dusk sets in, Taytem starts to get antsy. Night doesn’t suit her; she has never liked being still. Each evening is a struggle for her. Heavy doses of melatonin were finally prescribed by her doctor so she could rest, and even then she rarely sleeps to morning. The hours of silence are the time when she has nothing to distract her from the throbbing, constant pain. The scoliosis in her back and the tightness in her hips keep her restless, uncomfortable. She has too much energy, she spends her days “always walking around, never able to sit down” for long. However, these hours of sleep are crucial to Taytem. She needs this time to heal, perhaps more than anyone else, because each morning she has to wake with the strength to battle one of the rarest and aggressive diseases in the world.
Taytem was born in September of 2013. She was a bouncing, beautiful baby girl who was deemed perfectly healthy – except that she didn’t pass her hearing screenings. After failing 5 more, doctors concluded she might be deaf. The first few months of her life, she suffered respiratory and ear infections so the decision was made to put tubes in. After that, the problems seemed to go away. But when Taytem was 8 months old, her mother found a lump on her back while giving her a bath.
For the next few months, the feelings of hopelessness spiraled for the White family as Taytem was diagnosed with infant scoliosis (which is just about as rare as it gets), and continued to receive testing for her growing list of symptoms. A week after her first birthday, her mother received the phone call that confirmed her worst fears: Taytem had a life-threatening disease called Hurler Syndrome that needed to be treated immediately or she would die. The couple describe that moment as “feeling as if our whole world was ending.”
But there was no time to waste, Taytem needed their support to fight for her life.
The next few months were a blur: Taytem had a g-tube and central line placed in her chest so she could begin receiving weekly enzyme treatments. Her disease rendered Taytem unable to metabolize complex carbohydrates. The only answer was a bone marrow transplant. So Taytem received 8 enzyme treatments before she was eligible for her transplant. Her older brother and biggest supporter, Talyn, was a 10 out of 10 match for Taytem. But the family’s relief was cut short when they discovered that he is a carrier for Hurler’s as well, and could not be the match for his sister. However, they found a perfect match for Taytem right away, and she returned to Minnesota in January 2015 to get ready for her transplant.
In February, Taytem endured 6 days of the strongest and most aggressive chemotherapy treatments in preparation for her surgery. She was 1 1/2 years old. On February 9th, Taytem “got a second chance at life.”