So many parents worry about the dangers of drugs and alcohol, but what if some of those same hair-raising concerns came up in regard to food?
For parents who have children with Prader-Willi syndrome (PWS), that’s precisely the case. They often have to padlock their refrigerators, cabinets and even trash cans because they know that for their children, who lack normal hunger and satiety cues due to dysfunction in the hypothalamus, food can be just as addictive as cocaine.
Denver-area moms Rachael Fischer and Julie Foge have entered this world relatively recently with their young children. Fischer’s 6-year-old son, Jude, and Foge’s 3-year-old daughter, Eliza, have PWS. As you might imagine, living with a disorder in which the brain tells those who suffer that they haven’t eaten in three days, can be especially difficult around the holidays, where every party or gathering is centered around food.
To combat that holiday stress and offer their kids a healthy distraction from turkey and pie, Fischer and Foge joined forces to shift their families’ focus each Thanksgiving Day. Rather than zeroing in on food, the moms organized and launched the Harvesting Hope 5K in 2015 to battle the disorder on a larger scale before sitting down to their own Thanksgiving meals.
“The focus is on the race, getting to that finish line and accomplishing something,” Fischer said. “As a parent, I sometimes feel really helpless. That’s why what Julie and I have done with the race, it’s a fun way to feel like we have a fighting chance. It’s a really rare syndrome that will get harder over time, and we have to protect our children from the damage they could do to their own bodies.”
One hundred percent of the money raised from the Harvesting Hope 5K goes to the Foundation for Prader-Willi Research to help find a cure. After all, food shouldn’t be the enemy for anyone.
A Syndome That Affects All Systems
PWS affects one in 15,000 people, and it’s the most common genetic cause of life-threatening childhood obesity.
The condition, which occurs when there’s abnormality of chromosome 15, affects appetite, growth, metabolism, cognitive function and behavior. Children with PWS typically have low muscle tone, cognitive disabilities, chronic feelings of insatiable hunger and a slowed metabolism.
Fischer’s son, Jude, wasn’t diagnosed until he was almost two-and-a-half, which is rare. Usually, there’s a “failure to thrive” once the child emerges from the womb. Those babies with PWS have a difficult time getting enough oxygen and nutrients into their system.
“For whatever reason, that wasn’t his story in the beginning,” Fischer said. “He definitely had the low muscle tone, but doctors said he probably didn’t get enough nutrients in utero and that’s why he was small. But, after a year, he wasn’t hitting certain milestones, like sitting up on his own, so that opened the door for some tests and eventually a PWS diagnosis.”
Today, Jude is an active and intelligent boy. He has apraxia of speech, meaning he can understand and say everything, but his brain struggles to develop a plan for speech movement, so he can’t articulate words as well as most kids his age.
“We have him in private speech therapy once or twice per week, and we also get speech therapy in school twice a week,” Fischer said.
In terms of eating, Jude doesn’t have a cue for satiety.
“He’ll eat a full breakfast and within 20 or 30 minutes, he’s asking for a snack,” Fischer said. “His body and his language are just not doing what his peers’ are doing, and I think that’s frustrating for him at times. He handles it as best as you can imagine. We try to make him feel like he lives as normal of a life as possible and he’s not defined by the syndrome.”
The Foge family, by contrast, knew almost immediately that Eliza had PWS. She spent the first five weeks of her life in the NICU because she needed a feeding tube.
“She couldn’t stay awake or suck enough to get the nutrients she needed,” Foge said. “My husband, who is an orthopedic resident, was the one who was really concerned that it was Prader-Willi, so he kept bringing it up to the care team. They went ahead with the blood work and about 10 days later, the results showed PWS.”
Eliza has had to deal with a host of issues, including sleep apnea, hip problems resulting in two hip surgeries within the first year of her life (with a third surgery on the way), scoliosis of the spine, and a speech delay.
“The roughest part for us is you think you’re getting to a great place and then something else pops back because this syndrome affects so many different systems,” Foge said.
The family has started to see an increase in food seeking behavior with “some anxiety around food.”
“There are also some inclinations to OCD-like behavior which is a common thread within the PWS community,” Foge explained. “There’s a lot of different ways it manifests, but all that aside, Eliza is the friendliest, most joyful child I’ve ever known.”
Running Toward a Cure
Neither Fischer nor Foge knew a thing about PWS before their children were diagnosed, and as they learned about the condition, fear set it.
“You have this child, and you just imagine the world of possibility that’s going to be there, and when you get a diagnosis that has so many challenges, all of a sudden, you’re looking at a different story and a different future, not just for the child, but for the entire family,” Foge said. “So we really grappled with that in the first couple of weeks of her being alive. Thankfully, our hopefulness has gotten a lot better.”
Part of the reason for that is both women sought out support from other families affected by PWS.
Fischer and Foge initially met at a PWS fundraiser, but they had heard about one another because they have the same pediatrician.
Right off the bat, two heartbeats became one. They not only shared their families’ journeys with PWS that night, but they set a plan in motion to make a bigger impact on the PWS community.
Fischer has been a long-time runner with multiple marathons under her belt, so her idea was to organize a turkey trot benefiting the Foundation for Prader-Willi Research. Although not a runner herself, Julie was on-board immediately and ready to run her own kind of race to make the event possible.
However, as the two started planning, they realized they needed to obtain a permit.
“We discovered there was a moratorium on any new permits in the city of Denver,” Fischer said. “They weren’t going to issue any permits for any walk, run or event that was new.”
Not letting that derail their plan, Fischer dug in and learned that in other cities that implemented a moratorium, there was a waiver process in place.
So, in an attempt to get the moratorium waived for their race, they approached their local councilman and shared their story with him.
“He was having his first baby,” Fischer said. “We told him this would give us hope in the rare disease community. He liked it so he gave us the one exception that he had, and waived all the permitting fees as well, so we were able to give another $1,500 toward the cause.”
With one giant turkey trot already running in the area, Fischer and Foge decided that the big draw to their event would be its family-focused component.
“We said maybe our appeal is a really fun kids’ zone, and we make this so family-forward and so kid-focused that anybody who wants to come, whether than can afford to pay or not, can come.”
So, the race is free for kids who are 10 and under, and at the end they get a beautiful medal handed to them by firemen.
The plan has worked so far. In 2015, about 500 people registered. In 2017, the number grew to more than 1,400, with $64,000 being donated to the Foundation for Prader-Willi Research.
Don’t Judge a Book by its Cover
In many ways, PWS is a hidden disorder in a very food-focused world.
“Sometimes at events, Jude won’t stop asking for snacks, and he’s crying,” Fischer said. ” I have to keep saying, ‘Not now. It’s not time yet.’ I know people are probably looking and thinking, ‘why don’t you feed your child?’ He looks pretty typical, so I’m sure people are thinking I’m so mean to him.”
Thus, raising awareness for PWS is a big component to the Harvesting Hope 5K, too.
“It’s easy to look at a kid who’s overweight and think that parent is feeding them junk food or not encouraging physical activity, or there’s a meltdown and you don’t know about the anxiety or the OCD behaviors that’s behind it,” Foge explained.
So, quite literally, these two moms are putting PWS in the spotlight one step at a time.
“On one hand, it was scary starting this race, and putting it out there,” Fischer said. “But, it was one of the best decisions we could’ve made.”
And for that, gratitude prevails, especially among those affected by PWS.
To learn more about PWS and the Foundation for Prader-Willi syndrome, visit HarvestingHope5K.com.