Betsy attends therapies multiple times each week, including physical, occupational, and speech therapy. Her education is carefully tailored to her needs, with specialized support to help her grow, learn, and connect with others. Laila and her husband work constantly to reduce barriers to Betsy’s mobility and safety.

Their family relocated from Alaska to Washington state to be closer to Seattle Children’s Hospital and to live near extended family who could help lighten the load. Although Laila praised the high quality of care at Providence in Alaska, icy winters and the risk of falls created challenges that were difficult to manage.

They recently purchased a single-level condo to make movement easier and to create a safer environment for Betsy as she grows. The family relies on Medicaid and private insurance to sustain her therapy and care needs, and they have already established a special-needs trust to support her future.

Although cautious about clinical trials, Laila is encouraged by the growing momentum in DM1 research. She sees the commitment from scientists as a sign that the community is seen, valued, and supported.

Her hopes for future treatments are deeply personal. Laila dreams of therapies that could increase muscle strength for herself so she can stay active in Betsy’s life. For Betsy, she hopes for gains in mobility, speech, and processing speed that would reduce the stigma and barriers her daughter will face.

Laila often shares how meaningful it is when biotech teams take time to meet families, listen to their experiences, and learn what matters most to them. She believes this creates better science and more compassionate programs.

She values ARTHEx’s presence at conferences and its partnerships with advocacy organizations, especially MDF, because it shows a commitment to the community beyond drug development.