Day Four

March 5, 2017: We are sporting World of Mae gear!
The idea of World of Mae came to us when Ada was 5.5 years old the night we first heard the words Phelan McDermid Syndrome and Shank 3 gene. For 4.5 years Ada was Ada and with MANY mysteries and MUCH magic. I felt that night and still today that Ada has PMS …PMS does not and will never define who she is. It plays a big part in logistics for sure and gives us scientific understanding of how her body works but her spirit and those of her brothers and sisters with PMS have undeniable strength and purpose in this life that many times feels unearthly. We have a Facebook and twitter World of Mae page, and @fairystrong Instagram account. We hold a 5k every autumn to celebrate the uniqueness in us all. We also produce World of Mae T shirts that are fresh original designs and a cool way to spread Ada’s wings! Ada loves music so we often incorporate her favorite tunes into everything World of Mae (WOM). We find music to be a great universal medium to hopefully spread awareness about PMS which is often misdiagnosed as autism. All this to honor our fairy girl who teaches us to rise above! #PhelanLucky #WorldofMae #ThisIsUs #ThisIsPMS #PhelanMcDermidSyndrome #fairystrong#RideTheWave

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