About Ali's Army
Ali's Army was created by her parents & loved ones long before Ali was diagnosed with FOP. Before Ali was correctly diagnosed, she was misdiagnosed with several things. At 4 months of age we were told her malformed big toes were called "Partial duplications within the joint", "Extremely rare & 100% identical, only mirrored", surgery was recommended but we declined.. As Ali's neck began to stiffen and crack constantly upon moving it, we were told many many things by numerous doctors regarding what was going on, at one point Ali even received a lumbar puncture to check for meningitis. At age 3 she was diagnosed with Klippel-Feil Syndrome. Ali then began having swellings & pain that sparked several xrays on her whole body. She was diagnosed with Multiple Hereditary Exostosis. Then came Noonan's Syndrome & Lymphatic Malformation. Then the worst possible decision we could have ever made...a surgery. We opted to have a biopsy done on one of the swellings, recommended by a doctor who had been treating Ali since birth. The surgery made Ali worse. Our family went through hell & back trying to figure out what was going on with our baby. It wasn't until we saw a geneticist in Columbus, Ohio that all of her strange medical issues were looked at as one. That is when the blood work was done & the confirmed diagnosis of Fibrodysplasia Ossificans Progressiva was made.
That moment the diagnosis came in & we knew they were finally right stands in our minds like a photograph. The tears seemed never ending, and to this day the pain has not ceased. How do you watch your little girl suffer knowing there is nothing you can do? After watching her grow & learn to walk, run, laugh, talk & play for 5 years, how do you turn off the thoughts of the future you had for her? We learned there was no cure, no treatment, nothing at all we could do but watch as FOP took our baby from us.
We were mad at God, we were mad at the world. We were hurt, angry, sad & felt defeated. Every emotion possible that you could feel passed through our minds & hearts that day & continue to on a daily basis.
So the hard fight to put Ali's Army on that map began. There are several FOP families that raise money for IFOPA, the International FOP Association, there are amazing doctors researching a treatment & a cure for those very rare 1 in 2 million who suffer from FOP. We wanted to do something, anything, just to help.
Ali's Army, while wanting to help raise funds for a cure, wanted to do more. The hardest thing for us to deal with through everything was the not knowing. Then on top of that the misdiagnoses had made our baby worse. When we found out that there were an estimated 2800 others out there that were yet to be diagnosed our mission was clear. Raise awareness of this terrible disorder. FOP is one of the world's rarest & most disabling medical conditions. Misdiagnoses lead to unnecessary procedures that can exacerbate the progression & cause irreversible harm to those afflicted. An early diagnosis is key. Look at the toes! All it would have taken was for Ali's Orthopedic doctor to know what her malformed great toes meant. A look at her toes & a simple blood test. All of the exacerbating procedures would have been avoided & who knows how much movement Ali would still have. Along this journey we have gotten to speak with many other FOP families & hear their stories, most that would bring a tear to your eye. The majority of them were misdiagnosed & suffered some irreversible damage, some more than others. While the quick progression of FOP can significantly shorten the lifespan of the individual there are FOP'ers who have proven this is not always the case.. Unpredictable....That is the life of one with FOP. Ali's Army is also dedicated to raising funds to aid the FOP families in need. When Ali's father told his long term employer Ali's situation he was permanently laid off. We had just purchased a home, we couldn't function mentally for a long time. We needed help, needed someone to help pull us back up, and we didn't know where to turn, we want to create that shoulder for others. Upon talking with many others we have found we were not alone. Some needed just one house payment, just one utility payment, others, like us needed help getting special equipment, or gas money, or even a referral to a doctor & help getting to that doctor. It is our hope that we will be able to help pull others up & help them see that while life with FOP will change you forever, there are so many supportive people that will be there holding your hand through it all. Dr Kaplan & his team at the University of PA have been working so very hard & areso close but we need to keep the funds coming in, as 75% of it comes from families like ours & fundraisers the families hold, we will help make sure you know about those fundraisers. Last but not least, Ali's Army would like to connect people all over the world with FOP'ers that may live closer to them, so that they may participate in local fundraising & provide support to those families in their area. We thank you in advance for helping us meet our goals! Thank you for being part of Ali's Army!