At five-months-old, Hope Hailey Haugh is one tough little girl.
Hope was born with a rare genetic disorder that is known as 2q37.3 deletion syndrome. It is characterized by weak muscle tone in infancy, mild to severe intellectual disability and developmental delay and other physical abnormalities. Hope and her parents Robert and Nerissa Haugh have endured several hospitalizations and follow up procedures.
“She was only a few weeks old when we first saw her symptoms in action,” said Robert. “Her main symptoms have been seizures and apneic episodes where she’d stop breathing.”
Hope would turn blue, and it was only for Nerissa’s training as a medical assistant and in infant CPR, that she was able to revive her.
Even after these terrifying episodes, it took nearly two months to get the actual diagnosis. Her genetic tests came back with the genetic deletion — and even more surprising, so did her father’s.
“I have never had any of the major symptoms of the disorder,” Robert said of the news.” But in hindsight, I now know some of the more minor things I have are related to 2q37.3. I’m not sure if we are the first known case where an infant and father both have the deletion.”
The emotional stress took a toll on the small family who felt overwhelmed with navigating parenting of a child with a rare disease.
“We had many sleepless nights. Watching our daughter go through a gamut of testing to try and solve why she was having these episodes, we found support from few places, but one organization stood out— Global Genes.”
The Aliso Viejo non-profit exists to eliminate the challenges of rare diseases by building awareness, educating the global community, and providing critical connections and resources that equip patients and their families to become activists for their rare disease.
The Haugh family wanted to give back and they had the perfect plan on how to do it.
Robert had formed Wrestling for Charity in 2005 and turned to the non-profit to help bring awareness to his daughter’s condition.
“I'm a lifelong wrestling fan and became involved in pro wrestling while still in high school. I began helping promote small, local events in the Bay Area,” he said.
Now they’re planning for HopeMania which will take place at the Walnut Grove Gym at N. Hartley Street in Patterson on Sunday. Doors open at 3:30 p.m. and the wrestling will begin at 4 p.m.
The line-up includes Turlock’s own “El Pistolero” Julio Pedroza, as well as "Metalhead Maniac" Sledge, Fallen Flower Kikyo, "Mr. Athletic" Jeff Cobb, "Moneymaker" Will Cuevas, "Wrestling Personified" Rik Luxury, and others.
Tickets are $10 for adults and $5 for children and are available at www.wfcwrestling.com. The proceeds from ticket sales will benefit the international rare disease organization, Global Genes, and go to helping other families like them.
“It's been very tough on the family. Nerissa and I have been tremendously blessed with support though,” said Robert. “The most difficult thing is knowing that the future is quite uncertain with how the disorder will progress and what other symptoms may arise.”
The family also spoke about how explaining the condition and possible symptoms to family and friends has been difficult, as people just don't realize how unique and challenging treatment is for rare genetic disorders.
“There's no way of predicting what symptoms Hope will have,” Robert added. “Nerissa and I have been very strong and we have faith all will be well, as we are both very strong-willed, positive people.”
