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?
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