Dear Amy’s Family and Friends,
As of this moment, it has been 2 years, 2 months, 2 weeks, and 4 days since we found out about Amy’s Special Leg. Since that moment, we have done everything we could to help her to beat this disease, and thrive in spite of it.
One of the most frustrating things that I discovered early on was the lack of information about Congenital Pseudarthrosis. Once I was through the initial shock of the diagnosis, I wanted real information, from real people. Pictures of what braces could look like, and ideas of what to expect. Help with shoes and socks and pants, and questions I should ask her doctors… Instead I found a vacuum, populated only by medical databases with damning and conflicting information.
Thwarted in my quest for practical information, I started looking for support. All I initially found were links to support amputees, and that was a road that frightened me terribly at that raw early stage. Searching for patient success stories, I found two videos. One for a young lady named Gabby, who had graduated from braces, and was a cheerleader and a dancer. The other a little girl named Silvie who was still a toddler. I watched these videos on loop and clung to them like my lifeline – because there was hope out there. Eventually, I found my way to a support group on Facebook, and those women (and a few men too!) brought stability and sanity back into my life – I am so thankful for them.
I decided then and there that my little girl would follow in their footsteps. I wanted her to thrive, and then be a source of hope, and maybe even inspiration for others too. This is why I’ve meticulously been documenting her journey all this time, and why I made her little picture story on Facebook public. But now after 2 years, 11 casts, 8 braces, and one surgery – that has added up to 253 pictures. It’s not such a little picture story anymore! I think it’s also very daunting for anyone new to look at. There are no easy ways on Facebook to organize information, or to search for it. And so, this is our little pet project. Amy is 4 years old, and she now has her very own website chronicling her journey.
So, all of the future information and posts about Amy will live here. All past pictures, journal entries, and captions have already been transferred here, categorized, and tagged. As we go along, I’ll add helpful information as we find it. I know it’s pretty bare bones now, but I’m hopeful that maybe it can help someone out there.
Anyways, thanks for hanging out with us this long, and if you have any constructive criticism, we’re all ears!
Amy’s Mom & Dad
Duffy J. Floris · September 24, 2018 at 6:03 am
I love it so awesome she’s my Hero
Stephanie Russell · September 24, 2018 at 6:12 am
This is an awesome thing you guys have done! You are such great parents to do this, not just for her – but for others as well.
Laura · October 4, 2018 at 2:46 pm
This looks like a great website. It definitely fills a gap.
Comments are closed.