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Just over a year ago, Eric Weingrad's life took a turn he never expected, and one he's still trying to accept. His then 11-week-old son Holton suffered a severe traumatic brain injury (TBI) after his skull was cracked and he stopped breathing for an unknown amount of time under the care of his nanny.
Weingrad, 38, an editor at Mom.me's parent company Whalerock Industries, has written about what happened to Holton that morning for Mom.me. In specific, heartbreaking detail, Weingrad recounts the minutes, hours and days following his son's injury, and the frustration he and his wife have experienced in trying to understand what happened and how best to find their son lifesaving and helpful treatment.
Over the past year, through their Incredible Holt Facebook page, the couple has built a community for TBI survivors, their caretakers and families. In that space, others shared their own stories and experiences as Weingrad posted updates about Holton's treatments and setbacks.
Compelled by his and others' experience with insurance, medicine, and the frustrating and frightening delays of bureaucracies, Weingrad took steps to find a way to help those with TBI benefit from his knowledge and experiences. A year after Holton's injury, Weingrad launched Holton's Heroes, a non-profit with the mission to provide children with therapy tools and resources for their loved ones.
'It's inconceivable that we wouldn't try to pay that forward. We know we'd be thrilled if someone did that for us.'
"There are thousands of other families just like ours that don't live near the best hospitals, don't have access to the best therapist and don't know where to turn for information," Weingrad said. "We want to be a gateway to help."
The heart of Holton's Heroes is to be a resource for those with TBI comes in the form of community and information. On a practical and life-changing level, it uses funds donated to the non-profit to buy and ship devices and equipment to those who need it. As Weingrad experienced, it can sometimes take months or years to get the right tools through the usual referral and insurance system. A simple application on the Holton's Heroes website could get a qualified child a necessary piece of recovery equipment much sooner.
Notably, there are no income qualifiers. Applicants also don't have to prove insurance turned them down. A person doesn't have to be extra-sick, or suffering more, in order to qualify for something that could benefit their lives and recovery.
"If your child needs a piece of equipment that might give them a chance to gain back some quality of life, we want to try and make that happen," Weingrad said. "There shouldn't be a waiting list for recovery."
The effort will be costly, and Holton's Heroes needs regular donations to be sustainable. But the mission recognizes what families are going through and what TBI sufferers need—and can't typically immediately get—to mitigate the effects of brain damage.
Weingrad doesn't sugarcoat any of this past year. He doesn't describe these days as better than the ones immediately after the injury. Holton fights for his life, still, every day.
But his family has received so much support, Weingrad says, from friends, families and strangers. "It's inconceivable that we wouldn't try to pay that forward. We know we'd be thrilled if someone did that for us."
TBI is responsible for more than 2 million emergency department visits annually.
We typically hear about TBI in terms of soldiers at war. But, in fact, TBI is the leading cause of death and disability among children and adults from 1 to 44 years of age in the U.S. As the Weingrads found out, the medical community understands surprisingly little about the brain. Much of Holton's treatment has been up to his parents to try to understand, advocate and push for.
"As my son's seizures continue to stump some of the best neurologists in the country, we are constantly just playing a guessing game as to what med will work," Weingrad said. "I wish that wasn't the case but it's a fact. The only thing we're sure of is that therapy will be the tool that brings our son back to us—if that's even possible."
TBI is responsible for more than 2 million emergency department visits annually. For TBI survivors, it can result in impaired thinking, memory, movement, vision, hearing and emotional functions. This affects not only the TBI sufferer, but their families and communities.
"We never intended to be part of this community but now that we are here to stay, we want to make a difference," Weingrad said.
For more information about TBI or Holton's story and the stories of other survivors, visit Holton's Heroes. Donations of any size are being accepted and will make an immediate impact for one of the millions of TBI sufferers in the U.S.