Hopemania Coming to Patterson on June 14th, Proceeds to Benefit Families of Those with Rare Diseases
June 10, 2015
What could a five-month-old girl, a handful of costumed wrestlers and the plight of the rare disease community have in common? Attendees of the June 14th HOPEMANIA event will soon find out. The match, featuring former WWE Star, Ricardo Rodrigues, will take place in Patterson CA and proceeds from ticket sales will benefit the international rare disease organization, Global Genes.
The event is being held in honor of Hope Hailey Haugh, who was born to parents Robert and Nerissa Haugh, with a rare genetic disorder (2q37.3 deletion syndrome.) Hope required several hospitalizations and follow up procedures. The condition is characterized by weak muscle tone in infancy, mild to severe intellectual disability and developmental delay and other physical abnormalities. Only around 100 cases of the disease have ever been reported worldwide.
“She was only a few weeks old when we first saw her symptoms in action,” says 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 deletion—and even more surprising, so did her father’s.
“I have never had any of the major symptoms of the disorder,” said Robert.” 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 wreaked havoc on the small family who felt overwhelmed with navigating parenthood 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 disease 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 family wanted to give back and they had the perfect plan on how to do it.
“We started Wrestling For Charity in 2005,” said Robert. The organization officially formed as an LLC in 2014. Robert manages the not-for-profit company. “ 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.”
Now they’re planning for HopeMania, whose proceeds will 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. There’s no way of predicting what symptoms Hope will have. Nerissa and I have been very strong and we have faith all will be well, as we are both very strong-willed, positive people.”
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.
Friends, family, attendees and wrestling fans can learn more about rare diseases, their prevalence, and how you can make a difference at www.GlobalGenes.org.
Sign up for updates straight to your inbox.