Gainesville mothers of children with rare diseases share this message: You're not alone


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    Five mothers of children with very different, complex conditions.

    “Payton has Trisomy 18.”

    “Moriah has a condition on her x chromosome—she’s missing 76 genes.”

    “Eli has a rare genetic syndrome called Coffin-Siris syndrome.”

    “Claire is 6 and a half and has a very rare disorder—it’s a duplication on the 19th chromosome.“

    “Harper has Rett syndrome.”

    Their differences from the rest of the world are what makes these mothers so similar: They understand the feeling of having a child with rare special needs.

    “They get it,” said Jessica Essex, Claire’s mother. “They understand. But just to verbalize it sometimes, to say it out loud is all we really need.”

    That’s why today, on rare disease day, these mothers want every parent of a child with a rare disease to know they are not alone.

    “You really need to be with people who get you,” said Kristen Thompson, Payton’s mother.

    These mothers found each other on social media and meet weekly to just decompress, share their wins for the week, and maybe just vent about their hardships.

    “They’re not going to feel sorry for me,” Thompson said. “And I think all of us agree we don’t want them to feel sorry for us.”

    They say having each other sometimes is what gets them through and friendships like these are attainable for every parent

    “You may join a group, that special needs group, and it may not be what you are looking for, but keep looking,” Essex said.

    Each mother has been able to find a few people around the world whose child shares their rare disease and can share ideas on things like new medications, good doctors and how to handle behavior.

    “Being a parent is hard,” said Leslie Youmans, Harper’s mother. “Being a parent of a child with special needs is infinitely harder. Without these ladies’ love, support and encouragement, I would be just lost.”

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