Pura Syndrome With Melissa From Washington

Send us Fan MailIn 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 Markers00:00 Intro02:29 PURA Syndrome diagnosis07:30 Special diet08:45 Biggest challenges10:25 Typical day14:10 Balancing caregiving responsibilities with other aspects of life16:47 How Taylor's diagnosis has impacted Melissa's family18:43 Inspiration for Melissa to become involved in the PURA Syndrome Foundation20:47 Melissa's roles on committees22:37 Resources & Support Systems25:08 How Melissa helps PURA families find resources they need26:21 Overcoming challenges as a caregiver27:48 Triumphs with Taylor29:02 Hopes for Taylor's future30:45 Advice to new parents33:12 Advocating & finding support34:28 Get involved37:19 ConclusionSupport the show