Colorado Fact Sheet

Kelsey and Shaun gave birth to their daughter, Teagan, in November 2016. She was a perfectly healthy baby girl who had remarkable cognitive and communication skills—even forming two-to-threeword sentences at 5 months. The only challenge Teagan faced was walking without holding onto her parents’ fingers, but they assumed that this skill would develop with time. However, by August of 2018, Teagan still did not want to let go and was having additional balance issues as well as a tremor in her hands. At this point, Kelsey and Shaun had Teagan assessed by a pediatrician who ordered an MRI.

Initially, the pediatrician presumed that Teagan had a mild form of cerebral palsy. When the MRI results came back in October 2018, it was clear that Teagan had metachromatic leukodystrophy (MLD). Kelsey and Shaun sat in the neurologist’s office for 2 hours, crying and asking what they could do to stop it. The neurologist informed the family that there were no treatments available beyond supportive care. Kelsey and Shaun pursued clinical trials overseas but were denied because Teagan was too far progressed.

Teagan passed in February 2023. Before she passed, Teagan could no longer talk, stand, sit up, or play with her toys independently. Most days, she was rocked in Kelsey or Shaun’s arms or snuggled comfortably on the couch. Shaun and Kelsey did their best to keep her as happy and comfortable as they could. She loved any outdoor activities, like camping and fishing. Teagan experienced neurological storms and seizures, but all her parents could do was hold her while they administered rescue medication. To Kelsey, Newborn Screening would have had a profound impact by helping ensure Teagan received a timelier diagnosis and referral for potential treatment earlier in her disease progression.

 

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