A Letter and a Call to Action from Mara
Hi! My name is Mara Watson, I’m 12 years old and this is my story.
When I was one, I fell– like any toddler would–and couldn’t walk for a week. At that time, doctors looked at my bones and diagnosed me with a non-ossified fibroma, which means that, that bone had a small part of it that was weak, but would ossify (become hard again) by the time I was 20. At four years old, my fibula broke straight through when I jumped off a standard play structure. I was in quite a bit of pain on and off for years.
At nine years old I broke my toe by snagging it on a blanket. We found more of these spots in my foot. I took an MRI scan and found bone lesions in my pelvis (hip), femur (upper leg), fibula (lower leg) metatarsals (feet) and in my heel and toes.
The doctors re-diagnosed me with fibrous dysplasia, which is a condition where my body is born with perfectly good bones, but converts it to mushy weak bone at these lesion spots. I was really upset because I knew that if I broke my femur, hip or foot, it would be much harder to recover from than a fibula. We tried just about everything the doctors could offer from really heavy medication injections to a brace. Eventually I got a rod down my fibula.
We problem solved. We got really good at knowing my boundaries and at deciding what activities were worth having pain. When my foot started hurting really bad, we got special shoes to pad them and help my walking.
In August 2021, I broke my femur at camp doing things most kids could do. My leg was all twisted and it was the absolute worst pain I have ever experienced. A miracle was that the only place they could land the emergency helicopter was very close by me. A rod and multiple pins were placed in my femur. I went through the process again of hospital, home, rest, PT, hospital, home, rest, etc. I took my first steps again in November of the same year. It was hard, very hard, but now in May of 2022, I’m walking 3-6 miles almost every day.
I have really bad pain flares from time to time, but I’m learning how to cope with this chronic pain, mostly by finding ways to do what I love. I love swimming, and I’ve found ways of doing that. I love theatre, and I’ve found ways of doing that. I love traveling, and as of right now I’m living in Spain and traveling all over Europe. I’m from the United States, and living here is such an amazing experience. We are here because my dad is on sabbatical and I’ve been seeing everything. I hope other people with fibrous dysplasia will find success in what they love too.
I saw this bike ride on the FD/MAS Alliance’s website to raise money for fibrous dysplasia, McCune-Albright syndrome research, and I really wanted to be part of the effort. Since I’m in Spain, I am going to walk the Camino de Santiago. It’s this super cool walk that actually takes a month to complete, but I’m only going to do 8 miles of it. I know the 8 miles will hurt, but I want a triumph over this disease that has been controlling me my whole life. It’s incredibly hard to explain to people what FD is like. You have to grow up faster, and put up with a lot a lot of pain. If there was a way that a kid like me in the future could have a treatment that allowed him or her to go out with friends or play on the playground or even just walk up the stairs without worrying that they broke something, that would be absolutely amazing, but we can’t do it without your help.
Mara and her family on the Camino de Santiago’s iconic scallop shell trail marker
This fundraiser we are doing, you can donate to also and be a part of that change.
My family has pledged to donate for every mile I walk. I also donated my birthday this year to this cause. You too could really make a difference in our lives, and 100% of the money raised is going to research programs.
To families with a member with fibrous dysplasia, thank you for what you do, and to everyone who donates to our cause, thank you for helping us have a better quality of life, and to people with FD/MAS keep going. It’s rough, you know it, but keep perusing the things you love. You probably get told this a lot, but we really can do this.
