By Ibrahim Ahmed, FOP dad who lives in Egypt

It has been exactly one year since we confirmed my daughter’s FOP diagnosis, and I feel ready to share our journey...what we learned, what we went through, what this past year has meant to us, and the people and support that made this journey a little less overwhelming, and hopefully it can help someone else along the way.

A Sign No One Recognized

My daughter was born healthy, a beautiful baby, with one small, seemingly unimportant detail: her big toes were short, shorter than the others and pointing inward (they look adorable by the way). It looked very much like an adult with bilateral bunions, but small and very cute. My father had bilateral bunions, so when the neonatal medics asked if any of her parents had this condition, without thinking, I said yes, her grandfather had them, although bunions cannot be inherited. And that was it. The single most important sign for FOP diagnosis was overlooked since day one.

After four years of normal and healthy early childhood, my daughter slipped and fell on a hard floor, landing on her thigh. Nothing serious, just a normal fall. After a few days, there were no bruises, just some warmth, subtle swelling, and an alarming hardness at the site of the fall.

After a few more days, the hardness didn’t subside, so we went to a pediatrician. He asked for an X-ray, and it showed calcification and bone formation inside the muscle tissue. Before giving the doctor the X-ray, I had already researched what conditions could cause this after soft tissue trauma. The options were few: either myositis ossificans, a localized calcification, or another ultra-rare disease called FOP, which causes the body to form an extra skeleton in soft tissues over time.

I dismissed FOP because it was said to occur in 1 in a million. I didn’t think we would be that 1 in a million, and I simply dismissed it, especially since there were no other clear signs. At that time, I didn’t recognize the toe deformity as a sign of FOP, and I didn’t dig deeper.

It wasn’t denial, there just weren’t enough reasons to think otherwise.

After the X-ray, the swelling subsided, and we could feel the bone where the trauma had been, but otherwise her movement and tissues were normal.

The Years Before a Name

At age 5, she was practicing gymnastics, the exercises were tough, and she had transient swelling and pain in her left hip joint. The X-ray showed some cloudiness in the hip joint region, but the condition subsided, and we switched to more gentle sports.

Also at age 5, she had a dental filling. Two days later, she experienced pain in her left jaw joint and couldn’t fully open her mouth. This was her first permanent limitation of movement.

Looking back, one piece of advice I would share with any parent: think carefully before doing dental fillings for baby teeth. They will fall out anyway, and sometimes it’s better to avoid unnecessary procedures.

At age 6, while swimming, we started noticing a limp when she walked, along with occasional pain. We began seeking medical opinions. Several doctors reviewed her X-rays and diagnosed hip joint dysplasia, a condition where the hip socket is too shallow to fully support the thigh bone, leading to instability, pain, and eventual joint damage.

One doctor suggested a corrective surgery called periacetabular osteotomy (PAO).

When I researched it, I couldn’t accept what it would do to my daughter, it felt very aggressive and invasive. Another doctor said it was hip dysplasia but not a typical case, and since the limp wasn’t permanent, he recommended conservative treatment, vitamin D, calcium, and avoiding activities that could cause trauma.

In hindsight, after confirming the FOP diagnosis during her first flare-up, I realize how critical that decision was. If we had gone with the surgery, which involves cutting and repositioning the hip bone, we could have caused severe, long-term damage, possibly leading to loss of movement and a cascade of complications far worse than what FOP would have caused by itself.

I truly appreciate the doctor who chose the conservative approach. It helped improve her condition, otherwise the consequences of surgery could have been catastrophic.

The Flare That Changed Everything

When my daughter experienced her first FOP flare-up, one year ago, she was 13 years old. It started as a small swelling in her neck, similar to a swollen lymph node. But I felt something was different, it didn’t feel separate from the muscle. I waited a week before consulting a doctor. Based on past experiences, I didn’t want to rush.

During that week, the swelling actually moved, from one place in her neck to another, receding in one spot and growing in another. I had never seen anything like it.

In the second week, after consulting several doctors (including school doctors who hesitantly dismissed it as lymph nodes), her neck became stiff, and she lost neck movement almost completely, very limited up/down, and turning left or right.

We immediately went to two doctors. Thankfully, both were cautious. They admitted they hadn’t seen anything like it before and requested an ultrasound. The report showed severe and diffuse muscle swelling with subcutaneous and interstitial edema.

At that point, I could no longer dismiss FOP.

I started researching it deeply. The first thing I came across was the big toe deformity. That was the moment everything clicked.

I decided not to pursue more medical opinions right away. Stepping back, at least temporarily, was the right decision until we understood how to manage the condition.

In moments like that, you realize how important it is to find the right people and support.

Finding the Right People

I immediately reached out to IFOPA, FOP Friends, Dr. Kaplan, and Dr. Pignolo. All of them were incredibly supportive from day one.

Helen Bedford-Gay from FOP Friends connected me with an Egyptian doctor familiar with FOP, Dr. Solaf, head of the genetic diseases department at a major university. She has been managing FOP cases since the 90s. Without Helen, I don’t think I would have found an FOP expert in my own country, let alone on the same day of diagnosis.

Hope Newport from International FOP Association (IFOPA), quickly responded to my email and arranged a call in the same week. Meeting with Hope made a huge difference during a very dark time. She guided us through ICC FOP medical guidelines, IFOPA resources, and educational materials.

Dr. Kaplan connected me with other specialists when needed, and Dr. Pignolo personally called me to guide us through managing flare-ups. I am really thankful for all of them.

Learning to Adapt

It has now been a full year since the first flare-up. My daughter has lost most of her upper body movement, but still she can do some tricks and compensate for her limited movement to perform her daily activities. She had those occasional bone bumps on her back, getting uncomfortable while sleeping, an alternate pressure air mattress and some lovely stuffed animals pillows were really helpful.

We’ve faced many challenges, school being a major one. IFOPA has a very helpful resources section dedicated to School. We always think about ways to overcome daily challenges. Having difficulty swallowing hard medicine pills? No problem, we take them with a spoon of yogurt, or find alternatives we can dissolve in juice. We adapt. Learning how to feed herself. Wear adaptive clothing. We've learned some helpful life hacks from The Ability Toolbox and from IFOPA's Melissa Davis. Adopting and adjusting every aspect of our daily life has been a journey for all of us.

There’s also a side of this journey that’s harder to put into words. When everything is happening so fast, you just keep moving forward, without always realizing how much it’s affecting you as a parent or a caregiver. I had the chance to join the caregivers’ support group meeting coordinated by Dr. Al Freedman, and it made me realize how important support is for caregivers, too. But with everything moving so fast, it hasn’t been easy to stay engaged. I hope to return to it as things settle.

And thanks to all the FOP support community members for sharing their experiences, we've learned a lot from your posts and videos.

What This Year Has Taught Us

Is FOP hard to live with? Yes, it is. But in life, there are always harder situations and far more challenging conditions. We are grateful for the many blessings we still have.

I still have my daughter, her laughter despite the challenges, her bright personality, her big heart, her intelligence and wisdom. She continues to teach us how to stay positive through everything.

Living with FOP has made us more humble and deeply grateful for the small things we sometimes take for granted. It has taught us, as a family—me (as her dad), her mom and her loving sister—to prioritize love, support, and care for each other, above our needs, and to be more mindful of others who may be going through their own quiet struggles.

We know the journey will be tough, but we truly hope to navigate it safely and gracefully until the end, and more than anything, I pray for my daughter and for every person living with disability or rare disease to always be surrounded by love and support.

This piece is part of the IFOPA Community Voices Project, a blog series featuring firsthand perspectives from individuals and families impacted by FOP. This space highlights the diverse experiences of living with FOP—from navigating daily challenges to finding moments of connection and purpose.

These stories offer insight into the realities of the FOP community and provide opportunities for readers to see their own experiences reflected in others' journeys.

Ibrahim originally posted his story in the Support4FOP Facebook group, a private Facebook group for people living with FOP and their caregivers, on March 20, 2026. Ibrahim's story appears as originally written, with subheadings added by the IFOPA for readability.