Saturday, April 23, 2022

How to Navigate the Website


Here you will find the story of how our journey with Leukodystrophy began. 

When Hailey was a baby I wanted to keep a diary. When Hailey got sick I decided to open my diary up for others that may have a medically fragile child or for anyone who wanted to keep up with us. Our story, our struggles, our daughter. It was a place where people could go to find out how Hailey was without having to ask me. 

Now that things are more calmed down I don't write as much anymore. Hailey has had her g-tube going on 10 years. Hailey has her Pacemaker and that's going on 7 years. This website is where and how things started. Where we are now is mostly on Facebook for a quick "How are we doing?" day to day type of thing. 

So for the HOW DID THIS ALL START? This is the website for that. For the HOW ARE THINGS NOW? That is on our Facebook Page. 

I know I'm getting to the point where we will phase out Facebook too, maybe turn this blog into a pamphlet/book one day????

But a lot of people who look up leukodystrophy find us and find resources they will need to navigate their journey. 

Leukodystrophy has come so far in the last 10 years and there is so much more help out there now. I know our story is very interesting and what we had to go through is pretty incredible. When people find our website and tell me what they got from it makes me happy. I'm happy we can help others. Let others know that they aren't alone. Things can be horrible, but they can also be so much worse. 

Start at the top and read how it all began. Then follow the journey to where we are now. 

Grab some tissues and read on. 

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