May Alexander Disease Featured Angel

Megan’s story is shared by her mom, Allison Hoover

Our daughter Megan’s story is similar to the other families in the AxD community. She went through years and years of countless tests to gather an idea of what was happening in her tiny body. Her initial symptoms were slow to present and seemingly without connection with each other, so her story is long and varied. Unfortunately, the ending to our story is different than the other featured AxD warriors, although it’s no less impactful.

Megan was 10 when we finally received her official diagnosis. My husband Keith and I were in blissful ignorance of the gravity of her diagnosis. Whether we unconsciously avoided the reality of her estimated life expectancy or we just didn’t fully absorb everything is still an unknown.

I mean, we all read stories about kids with life-limiting diseases, but we aren’t the parents of one, right?

We chose to simply love her with everything we had. We at least understood our time with her was decidedly limited, so we squeezed as much love and laughter into all of our lives as possible.

Megan passed away a short 10 months after her diagnosis on May 6, 2017. She was 11 years old.

If you have ever had the pleasure of meeting an AxD warrior, you will notice they have something extra special about them. They have the most precious smiles, most sparkly eyes, best laughs, as well as the most precious job on earth: to remind the rest of us to love fearlessly and with abandon, to live life to the fullest. They also teach us important life lessons on patience, compassion, and understanding.

Fighting for AxD warriors and alongside their families is our family’s honor and obligation. We owe our daughter this legacy. Megan was a true force of nature that touched every life she entered. She is our driving force in supporting Grayson’s Ladder, Elise’s Corner, End AxD, and every affected family worldwide.

The Hoover family is proudly marching alongside every AxD family. Keith and I along with our son, Zack, and extended family are watching closely as the beginning stages of the Ionis trials begin. We are excited for those who will participate. We stand firm next to those who aren’t able to participate yet.

We fight for our girl, Miss Megs – the sweet girl with a big smile, bigger heart, warmest hugs, silly jokes, daily stickers, and the kindest heart. We fight for you.