In this episode I talk with Melissa from the Pura Syndrome Foundation about her child Taylor now 27 who was diagnosed with Pura Syndrome 2 years after it was discovered in 2014. Listen along and learn about this condition and Melkisa's roles with the Pura Syndromde Foundation over the years from working on the grants committee, to fundraising to being a US ambassador for Pura Syndrome. YOu will also learn about her family life and caring for Taylor.
Chapter Markers
00:00 Intro
02:29 PURA Syndrome diagnosis
07:30 Special diet
08:45 Biggest challenges
10:25 Typical day
14:10 Balancing caregiving responsibilities with other aspects of life
16:47 How Taylor's diagnosis has impacted Melissa's family
18:43 Inspiration for Melissa to become involved in the PURA Syndrome Foundation
20:47 Melissa's roles on committees
22:37 Resources & Support Systems
25:08 How Melissa helps PURA families find resources they need
26:21 Overcoming challenges as a caregiver
27:48 Triumphs with Taylor
29:02 Hopes for Taylor's future
30:45 Advice to new parents
33:12 Advocating & finding support
34:28 Get involved
37:19 Conclusion
