MADISON, Wis. \u2014 Sixteen years ago, News 3 Now introduced viewers to two Madison brothers whose lives depended on heart transplants.<\/p>\n
Today, Ezra and Ivan Burger are no longer the toddlers viewers first met. Now 18 and 13, the brothers are looking toward the future and their family hopes that future includes a business built around what they can do, not the medical challenges they continue to face.<\/p>\n
Both Ezra and Ivan were born with mitochondrial disease, a rare genetic disorder that affects how the body\u2019s cells produce energy. Ezra received a heart transplant at age 2, and Ivan followed with his own transplant at age 3.<\/p>\n
While the surgeries saved their lives, their parents say they marked the beginning of a lifelong medical journey.<\/p>\n
\u201cTransplant is not a cure, but rather a treatment,\u201d Annie Burger said. \u201cSo Ezra needs to continually go through heart biopsies, every three months lots of lab work, lots of follow-up and many other specialty doctors appointments.\u201d<\/p>\n
Between the two boys, the family estimates they attend roughly 200 medical appointments every year.<\/p>\n
Their compromised immune systems mean illnesses often last longer and require additional monitoring, making their health unpredictable from week to week.<\/p>\n
\u201cIt\u2019s been a long journey,\u201d Leo Burger said. \u201cIt\u2019s been a lot of doctor\u2019s appointments, a lot of learning the system and a lot of growing as a family.\u201d<\/p>\n
That uncertainty has also made the family think differently about adulthood.<\/p>\n
This summer, Ezra turned 18. As Annie and Leo looked toward their sons\u2019 future, they began asking what employment could realistically look like for two young men whose health isn\u2019t always consistent.<\/p>\n
The couple, who have owned a Madison hair salon for 25 years, decided entrepreneurship might provide the flexibility traditional employment cannot.<\/p>\n
\u201cBeing small business owners, we thought about being able to give our boys something for their future,\u201d Leo said. \u201cA business they could run where they can work when they\u2019re at their best, and not work when they\u2019re not doing their best.\u201d<\/p>\n
That idea eventually became Brave Hearts Gourmet Popcorn.<\/p>\n
The family hopes to purchase a used shuttle bus already outfitted as a gourmet popcorn truck, then make modifications, including improved accessibility for Ivan, who uses a wheelchair much of the time.<\/p>\n
The truck would allow Ezra and Ivan to sell popcorn at farmers markets, festivals, sporting events, private catering events and community gatherings across south-central Wisconsin.<\/p>\n
The inspiration came unexpectedly.<\/p>\n
Leo said he remembered meeting a man with a disability who owned a popcorn business.<\/p>\n
\u201cIt just clicked,\u201d he said. \u201cI can see us doing that. I can see bringing the whole family in it.\u201d<\/p>\n
The business also fits the brothers themselves.<\/p>\n
Popcorn has long been a family tradition, and both boys light up talking about the new venture.<\/p>\n
Asked how he feels about the business, Ezra said, \u201cHappy\u2026 exciting\u2026 serving customers.\u201d<\/p>\n
The family says success isn\u2019t measured only by sales.<\/p>\n
Instead, they hope the business creates opportunities for independence while helping the brothers connect with their community.<\/p>\n
\u201cSuccess for the business to me is not raising money as much as it is to give the boys and our family purpose,\u201d Annie said. \u201cTo fight some of the isolation that comes along with having special needs and being handicapped.\u201d<\/p>\n
She hopes the business also changes how people view disability.<\/p>\n
\u201cI think a lot of times when people see wheelchairs or disabilities, they just think sorrow and sadness,\u201d Annie said. \u201cAnd it\u2019s the opposite. They\u2019re the bravest, funnest, smileiest, cool people to be around.\u201d<\/p>\n
The Burger family has launched a GoFundMe campaign to help purchase the truck, transport it from Colorado Springs to Madison and complete the upgrades needed before Brave Hearts Gourmet Popcorn can begin serving customers.<\/p>\n
The family says they hope the truck will eventually become more than a business, and that it will become a way for Ezra and Ivan to earn an income, build confidence and continue sharing the resilience that has inspired so many people since viewers first met them as toddlers.<\/p>\n
Read our previous coverage of Ezra<\/a> and Ivan\u2019s<\/a> transplant journey.\u00a0<\/p>\n