A Mother's Courage: "My Son Has A Rare Progressive Condition"

6 years ago

In high school, my friend Megan was the type of girl who had it all: she was beautiful inside and out, a gifted athlete and skiier, intelligent, and a genuinely nice person. Today's post is about Megan's parenting journey, because she grew up to be the most inspiring and extraordinary parent I have ever encountered. She is the kind of parent who makes me want to be a better person.

Megan with her beautiful family: her son Hayden, her daughter Elsa, and her husband, John.

I'm sharing her story here because it is so inspirational. So, in her own words, here is Megan:

The greatest gift to a mother is her child. What became the second greatest gift for me was most unexpected -- a child with a rare disease. On September 11, 2002, when my son Hayden was two and a half, he was diagnosed with Fibrodysplasia Ossificans Progressiva, or FOP. FOP is an extremely rare disease (only 700 people in the world have it) that over time causes the muscles and ligaments to turn to bone and render the person immobile.

Born May 15, 2000, Hayden Donald Pheif screamed his way into the world -– a normal, healthy baby in all respects except for funny-looking big toes. All was normal until a couple of months after his second birthday. Hayden had mysterious swelling in his back and neck and suffered from loss of motion. The search for an explanation began.

Initially diagnosed with fibromatosis, Hayden was referred to Doctor Robert Goldsby at University of California, San Francisco. Doctor Goldsby was not convinced this was the correct diagnosis, but after sending Hayden to several other specialists, Dr. Goldsby still did not have a satisfactory diagnosis. Purely by chance, a neo-natal nurse practioner overheard Doctor Goldsby discussing Hayden's symptoms and she asked the telling question: "Does Hayden have abnormalities in his big toes?"

Hayden's toes.

It was purely by chance that this nurse knew about FOP, and it was also purely by chance that she was in the room when Hayden's case was being discussed. While FOP wasn't what anyone wanted as a diagnosis, at least we knew what he had, and we had a referral into the world's expert on the disease, Doctor Frederick Kaplan at University of Pennsylvania. Now, we have a mission: to help Dr. Kaplan and his team research for a cure to FOP.

Megan, Hayden and Hayden's doctors.

During Hayden's life I've learned to put some of my feelings into compartments so that I can be a better mother. It helps me take away the feelings that won't be helpful to Hayden. And then when I go on a long run, I can pull them out and analyze them, cry, get mad or what ever needs to happen for me to feel better.

I remember the first day I used the compartments: it was when we learned of his diagnosis. We were at Stinson Beach on a foggy day with all of our family. Our vacation was supposed to take place in Maine, but it got rescheduled to Stinson Beach due to the mysterious swellings on Hayden's body. I think I put in the first compartment the feeling of "this is not happening to me." Seriously, it was so unbelievable. It just wasn't happening to me.

The biggest compartment holds fear. The things that scare me include trick-or-treating. I hate Halloween…dark nights and uneven pavement where Hayden could easily trip and fall. I hate going to the park -- lots of places to fall there. I hate baseball, skiing, and soccer. But I gladly let my child do these things because they make him happy.

I continually fight to keep the fear in the closet so that I can enjoy these things with him too. After first grieving for him and for the life I thought we would have together, my husband John and I decided that we would give Hayden the most we possibly could by allowing him to lead the most normal life possible.

Hayden on a skiing holiday.

Hayden playing baseball.

It actually wasn't as hard as we thought it would be to provide Hayden a normal life. Some time after his diagnosis, my husband John and I went to visit Dr. Fred Kaplan at the FOP research lab at University of Pennsylvania and learned that they needed money to keep their research going so I found a way to channel our grief -- into energy for fundraisers.

Still -- another compartment holds guilt. How did this happen and how can I make Hayden a happy child even when he has bad days? Is he happy enough? Am I doing enough for him? Am I giving his sister the same amount of attention and love?

Hayden and Elsa.

Advocating for your child is easy. Advocating for a child with special needs is motivating. It's what woke me up in the morning. It put me into action. It made me a better parent, even though I was still doing it by the seat of my pants. There aren't many people to share or confide in when your child is one of only 700 people in the world with a rare condition.

We joined the International FOP Association (IFOP) and started throwing annual fundraisers. I felt so fulfilled each year when I am working on the fundraiser. So many friends and family came out to help -- I am amazed and humbled. This year we threw our eighth fundraiser and have raised close to one million dollars for research. I am proud of the work that Hayden has inspired me to do for those with FOP.

That being said, it's bittersweet because the therapy (that is currently in drug trials) we helped to fund is too late to help Hayden. As I write this, I am at his bedside in pediatric intensive care unit (ICU). He has been here for two months on a ventilator because of pneumonia that was complicated by FOP. I am still so proud of him.

The sadness goes in another compartment; I know that he is not long for this world. There is nothing sadder to a parent than knowing you will outlive your child.

Hayden has had an amazing life. He has done things that would make me feel ill with nervousness, things that other parents wouldn't think twice about such as baseball, playing soccer, going on roller coaster rides and zip lines, skiing, just to name a few. Just the chance that he could fall and the extra FOP bone could grow causing a joint to freeze up would put my heart in my throat.

Hayden skiing.

Being a parent to a child with a rare disease has made me a better person, better than I thought I could ever be. It has made me selfless (and I love to be "all about me!"). It has made me patient, firm, honest, compassionate -- some of the hardest qualities to have when you are a parent. I know that when Hayden is gone, his little sister Elsa will benefit from all that he has taught me to be.

What is FOP?

Fibrodysplasia Ossificans Progressiva (FOP) is a rare genetic disorder where bone forms in otherwise normal soft tissues of the body like muscle, ligaments, and cartilage. This extra bone immobilizes joints over time, and eventually forms what amounts to a second skeleton -- without joints.

While the speed with which this "second skeleton" forms varies from patient to patient, the formation takes on a typical progression, usually starting with the neck and shoulders and moving to the lower section of the body and limbs.

Bone formation happens in periods known as "flare-ups." During a flare-up, the patient usually runs a low grade fever, is swollen in the affected area, and is generally uncomfortable. Flare-ups are often painful and can last for weeks. A flare-up can be spontaneous, or caused by blunt trauma -- a fall in the playground, for example. Unfortunately, while you can surgically remove the extra bone formed, the surgery itself is blunt trauma, and causes even more bone to form in its place. Even a visit to the dentist -- if not handled properly -- can cause a flare-up.

Hayden's hope is that before the FOP fully overtakes his body, by the time he’s 18 and has fully formed bones, the research for FOP will have come far enough to allow for surgical removal of extra bone that does not cause additional flare-ups. To learn more about FOP, go to www.ifopa.org.

Update on Hayden from Megan

Hayden taking his first steps in the ICU.

On July 11, Hayden came home from the UCSF Benioff Children's Hospital after a four-and-a-half month stay in the critical care intensive care unit for a collapsed lung that stemmed from a bout with pneumonia. Due to the critical state that he was in, a tracheotomy was performed and his breathing is now supported by a ventilator at night and supplemental oxygen during the day.

Although challenging, home has been a wonderful place for more recovery. Our home's many stairs have turned into a blessing in disguise as physical therapy, as Hayden can go up and down the stairs better and better each day.

He was also able to enjoy six weeks of "summer vacation" by having lots of play dates and catching up with friends, going to the movies, visiting Swirl (his favorite frozen yogurt store) and hanging out with cousins.

Earlier this fall, Hayden started sixth grade. Nervous and excited at the same time, we made it through the first day knowing this will be a great place for him. For more updates on Hayden and how you can help raise awareness, visit HaydensHope.com.

Written by Ado, and originally posted on The Momalog.

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