DEAR DADS – A Special Message from an Adventure Guides Dad
The YMCA of Orange County recently received an email from one of the dads who participates in our Adventure Guides program alongside his two extraordinary daughters. Both of his girls have a rare form of dwarfism called Morquio Syndrome and have used the past year in their Adventure Guides program to put any differences they may have aside and focus on simply being a kid. Their father wanted to show appreciation to the Adventure Guides for being a welcoming and accepting community and also take the opportunity to discuss his daughters’ conditions in the following message to the rest of the dads in the program.
Hi GPE dads,
I wanted to thank all of you for making Evie and my first year with the Princess Guides(Adventure Guides Program) such a great experience. I can’t say enough nice things about our own circle and how accepting the Dolphins(Program Community) are of Evie and her differences, but everyone within the GPE(Great Pacific Expedition) nation has been great as well, so thank you!
I also wanted to explain why Evie and Sadie, who’ll be joining next year, are so small in the hope of answering any questions you or your daughters might have.
For those that haven’t met them yet, here is a picture of Evie (8) and Sadie (5) from Catalina.
They are both little people, and have a very rare form of dwarfism called Morquio Syndrome. It is a type of lysosomal storage disease and they are missing an enzyme that breaks down sugars strands in cells. This causes material to build up that damages the cells over time. This largely affects bones, which is why they are small and their bodies are shaped differently.
Morquio is a progressive condition with no cure, and it’s a possibility that Evie may lose the ability to walk in her teens. Sadie is milder and less affected, but they both face a life time of surgeries in an attempt to improve their quality of life. Despite that, we are trying to give them both the most normal childhood we can, and this program is big part of that.
Children are naturally curious, and many will stare as they wonder why Evie or Sadie look different, are so small, or walk differently. We know they don’t mean anything at all by it, but the stares can be hurtful.
It would really help Evie and Sadie if you could take a moment to explain to your daughters that they are little people and their bodies are a little different, and that’s OK. That we are all different and unique; the world would be a boring place if we weren’t. Even though their bodies may be a little different, they still like to make new friends, laugh, have fun, and play. And if the children have questions, they are more than welcome to ask us; we’ll be glad to answer any questions they, or you, might have.
Perhaps you could share with them this book that my wife put together for Sadie’s Kindergarten class.
Thank you again for a great year. We’re already excited about next year and more GPE adventures.
Hopefully we’ll see many of you at Soak City next month.
Mike (Silly Rabbit)
Evie (Fluffy Bunny)
Sadie (Funny Bunny)
The Great Pacific Expedition(GPE) is just one of the many Adventure Guidesgroups through the YMCA of Orange County. Adventure Guides allows children and parents to have fun and create new memories with each other and with other families in their community.