Young child holding a plate with a slice of cake, standing indoors on wooden flooring, with a staircase and balloons in the background.

Tell us about Lucys diagnosis.

Lucy diagnosed with PTLS at age 20 months

Could you please describe your feelings when you received Lucys diagnosis?

Concerned about what future will look like, what kind of care we need to get in addition to what we are doing now.

Nonverbal, low muscle tone, low appetite, constipation.

What Difficulties does Lucy face?

What are your worries / thoughts for the future?

Young girl in a green dress with pigtails in a playroom, standing beside a wooden shelf with toy eggs on top, looks surprised or curious.

Anxious/ overwhelmed. Concerned about future and unknown

What kind of things does Lucy enjoy doing?

she loves books, lights & animals!

Why is research & a potential treatment for PTLS important to you & your family?

So important to us! And our child’s future