Hi everyone! My name is Leigh Ann. My husband Gary and I live in Pittsburgh, PA with our two wonderful boys, Hayden 7, and Nolan, 6. I want to tell you our story in hopes that it will speak to you somehow. The fact that you're checking this website shows that you're a caring person with a big heart - so whether you fund us or somebody else, thank you for the help and the hope.
Four years ago, when Hayden was three, he was diagnosed with Autism. At the time, we thought this news was the worst we could ever receive. Well, that changed in the fall of 2010. Hayden had gotten some blood tests, and his CPK levels came back super high. I didn't understand what this meant, but was told we needed to go to the ER for more tests. This time, the CPK levels came back even higher. Two days later, we got the worst call of our lives when the doctor said they Hayden might have muscular dystrophy. Later that week we met the neurologist who told us that more blood work was needed, but she agreed the possibility of muscular dystrophy was very likely.
The next step was to send Hayden's tests to several universities in order to confirm if it was indeed MD. We were also informed that when one sibling is diagnosed, there's a 50% chance that the other one will have it too. This is the kind of heart-stopping news no mom ever wants to hear. The university tests took almost six months to come back, and the whole time I hoped, feared, imagined every possible scenario, and prayed. I couldn't seem to shake the terrible feeling that Nolan also had MD. My worst nightmare came true in May 2011 when I got the call, at work no less, telling me that Hayden had MD and also that Nolan's CPK levels were extremely high. Although I had just experienced what it was like to get this kind of news over the phone, I had to call Gary. It was the worst day of our lives, and we just couldn't believe it was happening to us.
Fast forward almost 3 years later: MD is our new normal. The boys are doing pretty well, although we are noticing changes in Hayden. He is slowing down, has trouble going up and down stairs and tires easily. Ready or not, our future will be here soon. The biggest problem we face today is living in a raised ranch house with a steep driveway and lots of steps up to our house and out to the backyard. We know we cannot stay here much longer. We are in desperate need of building a one-story wheelchair-accessible home on a flat piece of property. To do that, we need to sell our current home and come up with money for a down payment and closing costs. This is where you come in, I hope We can't do this on our own. A donation - in any amount - would mean the world to us! Our future is filled with uncertainty, but being able to live in an accessible home that will fit our current and future needs would take a huge burden off of our shoulders. Thank you for reading my story and for your big heart that brought you to it.
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