New call-to-action
New call-to-action
New call-to-action

Beyond Ironman: Nurturing Perseverance and Advocacy in the Face of PWS

Discover the parallel challenges of training for an Ironman and nurturing a child with PWS in this story of perseverance and the power of family.

A special blog contribution from Abbie Ogilbee

IMG_4587Training for an Ironman is no small commitment. It takes planning, preparation, dedicated time away from family, special equipment, and countless hours of practicing the different sports. Preparing for this endurance challenge mirrored our time nurturing our daughter Elsa: countless nights of feeding, preparing special meals, time away from events due to sleepiness or food temptations, and ordering special equipment to meet therapy goals.

Today, Elsa is five, in full-day integrated kindergarten, and participates in gymnastics, rock climbing, and swim lessons. Although the first year of Elsa’s life was more than challenging, she continues to show us how perseverance and a strong will can let you do anything you set your mind to.

In the year leading up to the Ironman Triathlon event, David trained six to thirteen hours a week in swimming, cycling, and running, in addition to strength training and other self-care for recovery. He tracked carbohydrates, sodium, potassium, and magnesium levels in his nutrition. He ate a balanced diet to fuel and help recover his muscles. The time on his cycling trainer was spent watching Ironman events around the world for inspiration as well as podcasts on nutrition and health sciences. He spent time at night using his Excel spreadsheet skills to track his training and nutrition strategies, making sure this aspect of training was dialed in as well.

IMG_4585The kids were always excited to keep him occupied in our garage studio. They played in our indoor gym and danced to the music he listened to while on the trainer. Elsa was a great water girl, making sure his hydration bottles were always full and delivering snacks while on his long indoor rides. During the summer, we rode bikes with him as he ran the neighborhood. During good weather, we did long rides out by the mountains with him, keeping him company. Swimming was always a family event, as all three kids did swim lessons while Dad swam laps. “We do hard things” became a family motto and inspiration for us, not just for physical things but for life in general.

In the kitchen, our kids learned to eat for fuel. The kids would help make muffins and dinners to fuel the next day's workouts. It was always impressive to hear the kids say what Elsa could and could not eat. They all know her body needs something a little different, just like Dad needed his food to be different for his events.

Ironman week was full of activities. All three kids ran in the Ironkid races. Our boys completed the run, and Elsa did the half-mile run. Although she was last in the run, she was motivated for her own medal at the end. She loves to hear people cheering for her.

Ironman day was a frenzy. We packed the kids into the car at 4 a.m. to drop David off for the swim shuttle. The next time we saw him was after he transitioned to his bike. While the 2.4-mile swim went fairly quickly, the 112-mile bike ride was a significant portion of the day. Not only that, rain storms came in, drenching athletes on the course with several inches.

IMG_0391It was a long day of waiting until he transitioned to the run portion. He had been moving for 8 hours by the time the 26.2-mile marathon started. The run started off well for him, but by the half-marathon mark, the day’s work started to take a physical toll on his knees and ankles. Not only this, but the rain started up again in the evening, with several more inches coming down on the course. The next time we would see David, he would ultimately be at 11:30 at night for the finish. Tired and physically taxed, David had completed something that less than 1% of the world's population has accomplished.

The motivation for this effort was primarily Elsa. Much like all the preparation, dedication to eating habits, lifestyle changes, and sacrifices, families that have a loved one with Prader-Willi Syndrome feel much the same, if not more so. Training and enduring an Ironman race is only temporary, while the effects of this diagnosis are a much longer endeavorDavid wanted to test his own boundaries, to be sure, but his motivation was also a glimpse into the physical, emotional, and lifestyle challenges that are faced with a diagnosis like this. Not only this, but to bring more awareness to the diagnosis and its efforts for research advancement.

While training, David raised funds for the Foundation for Prader-Willi Research, ultimately being blessed to contribute a substantial amount to the organization. Multiple trials are underway researching groundbreaking medical treatments for individuals with PWS, and now more than ever is a time to advocate and encourage this research however possible.

In retrospect, the words “David Ogilbee, you are an Ironman!” have a significant meaning for the one finishing the race. But for those with PWS, the race is still underway, and they need all of our encouragement and love to continue running it. 

take action for pws research

Topics: Stories of Hope