*** UPDATE: March 26, 2017***
Shortly after the article below was published, Ari went into cardiac arrest. The night of March 22, Ari’s new heart stopped beating, according to his dad Mike, and after 30 minutes of CPR, Ari was placed on life support. The following is an update posted on March 26 by Mike Schultz:
Hi everyone. Here’s an update on Ari. He’s in cardiac intensive care recovering from the cardiac arrest and fighting rejection. Still on life support with ongoing challenges, but he’s resting. We’re waiting. Next few weeks will dictate what kind of progress he might be able to make. https://echoofhope.org/2017/03/26/loss-for-words/
Stow rejoiced on March 3 when 5-year-old resident Ari Schultz received a long-awaited heart transplant at Boston Children’s Hospital. Ari’s parents, Mike and Erica, stressed at the time that their son had a long road to recovery ahead, with no guarantees.
Indeed, the latest news is that Ari is fighting rejection of his new heart. And, in a jarring twist, the Schultzes just discovered they are losing their Lake Boon home to an irreversible mold infestation.
On March 20, Mike Schultz wrote in his blog on Ari’s journey, Echo of Hope: “Ari is struggling mightily. He went downhill and needed operations and procedures every day [last week]. On the day of procedures kids can’t eat. Ari had his food and water taken away every day.
“The pokes and sticks were relentless. The rejection treatment, which takes a while, is horribly uncomfortable.”
Before he was even born, Ari was diagnosed with critical aortic stenosis and evolving hypoplastic left heart syndrome at his mother, Erica’s 18-week ultrasound. Ari became the first person in the world to survive two successful pre-natal heart surgeries. The American Heart Association later dubbed Ari its “heart warrior.” Ari would still eventually need a heart transplant, and he was officially placed on the transplant list late last summer, then waited at BCH for a heart.
Meanwhile, back home on Lake Boon last week, as Ari battled heart rejection, the Schutzes discovered severe mold growing in the walls, ceiling, and floors — even in places such as the light switches. Mike explained on Echo of Hope that the house was built on the Lake back in 1938, and added to over the years before building codes became the norm. “Our contractor called it a ‘sick house.’”
Though experts advised tearing down about one-third of the house, Mike said, “We’ve decided it’ll be safer and less risky for the family – even if it costs more
– to tear the house down and rebuild from scratch. Can’t have hidden mold we never see still in the house when Ari gets home, or take the chance we’ll have to move once he’s settled in.”
How to Help
The Schultz family has become a relentless advocate for other children and families facing similar situations. “They’ve spent the last five years being advocates for heart families. Meantime, they have incredible bills,” reflected Genna Rosenberg, a Schultz family spokesperson who also has a child undergoing heart treatment at BCH.
She spoke of a time when Mike and Erica needed to stay close to BCH, so Mike was sleeping in Ari’s room. When the Schultzes were offered an apartment subsidized by the Ethan M. Lindberg Foundation, which helps families with the finances associated with their children’s care at Boston hospitals, Rosenberg recalled, “He said he didn’t want to take someone else’s spot.” (Eventually, Mike needed to use the apartment, she noted.)
Commenting on these latest challenges for his family, Mike said, “I wish I was bugging you to write about how we are are trying to raise money for other people and charities, or get blood donated. This is awful.”
As tough as it may be for the Schultzes to accept help, it will hopefully be there. Friends have set up a GoFundMe page to help re-build the house (https://www.gofundme.com/AriDangersNewHeart), with a goal of raising $500,000. At press time, about $156,000 had been raised. Meanwhile, the Schultzes are looking to rent a home until the new one is built, said Rosenberg.
Fortunately, General Contractor Elite Installations has donated its time to get the house back together, Mike reported. But there is a large list of goods and services needed; including:
House rental in the area during rebuilding
Architect / designer
Demolition and removal
Concrete / foundation contractor
Construction dumpsters and waste
Lumber and materials
HVAC and materials
Windows and doors (millwork)
Plaster and dry wall contractor
Fireplace materials (stove)
Shed for storing
To make any donations on this list, contact Jerry or Andrea Rubin at Elite Installations, at email@example.com, firstname.lastname@example.org, or 617-872-0277.
“What they really need are big companies to step up,” Rosenberg noted. She remarked that friends and colleagues are out recruiting major help, with one friend sending the Schultz story on to talk show host Ellen DeGeneres, and another piquing interest from a radio station in perhaps doing a fundraiser.
As Mike told readers at Echo of Hope, “Someday we’ll be able to express our gratitude properly.”