We all reach milestones in life. But few of us will ever reach one that compares to the one little Addilyn Davis will hit this weekend.
We first met Addilyn back in February of last year. At six months old, she was diagnosed with Krabbe disease, a rare condition that attacks the nervous system. At the time she was diagnosed, her parents were told she probably wouldn’t live past 13 months. This Saturday, with her 8-month-old sister Rilyn by her side, Addilyn will turn three. It’s a day her mother never thought she’d see.
“Not in a million years. Nope. She is my inspiration and she’s many others as well,” says her mother Jamie Davis.
With more than 70,000 “likes” on her Facebook page it’s safe to say she’s inspired quite a few people and you could argue that this little girl has experienced more in three years than most people do in a lifetime.
“She has. but that’s because of the support and the love and the care that she receives I honestly believe. I think that the prayers and the love that rallies around her every single day is what keeps her going. It’s what keeps her strong. She’s a tough cookie,” Davis said.
Addilyn’s family has been fighting to raise awareness of Krabbe disease since her diagnosis. They tried unsuccessfully to get a bill through the Maine Legislature that would put Krabbe on the screening list for all newborns. As is the case with many diseases, early detection can make all the difference in the world. Had Addilyn been diagnosed at birth she could have received a potentially life-saving transplant. Or her quality of life could have been dramatically improved.
“I want every child to be tested. everywhere. as far as for addilyn’s sake and the future babies of the state of maine. I’m not in it only for my child, I can’t save her at this point. So to give a child the opportunity to live which my baby doesn’t have I guess I want to give that.”
The Davis family is not giving up. They plan to try again to get that bill passed and the source of the families’ perseverance. She’s looking forward to her royal ball birthday celebration this weekend.
Everyone is invited to Addilyn’s birthday celebration is this Saturday from 7:00t-11:00 in the Starbird Building on the Farmington Fairgrounds.
Semi-formal dress is encouraged but not required.
For more information you can see their Facebook page: