In most ways, Isaac Haberman is like any other 10-year-old boy. He loves to play outside, is a wiz at Minecraft, likes to cruise around on his bike and jumps at any chance to visit Burger King.
Most people would never know that Isaac spends two days a month at Sanford Children’s Hospital for life-saving infusions to treat a rare genetic neuromuscular disorder called Pompe disease.
Isaac’s health journey has been long and complex, but through it all, he and his family have never walked alone thanks to expert pediatric care and direct patient support programs — all of which are fueled by philanthropy.
As the 2024 Children’s Miracle Network (CMN) Hospitals Champion for Sanford Children’s Hospital in Sioux Falls, today Isaac is sharing his story of hope and healing to inspire more support for pediatric health care and innovation.
“I want to help other kids, like me,” he said.
Isaac’s Story
Isaac was just 2 years old when his parents, Meg and Christopher, received life-changing news.
“Isaac had been going to South Dakota Birth-to-Three for speech and physical therapy. Four or five months into physical therapy, his physical therapist shared with us that Isaac was actually going backwards — instead of getting stronger, she had noticed some reductions in the strength of his legs. She recommended that we talk with a doctor about it. After seeing our pediatrician, we were referred a pediatric neurologist at Sanford Children’s Hospital,” Christopher recalled. “A series of blood tests eventually led a genetic test that revealed he has Pompe disease.”
Pompe Disease is a rare genetic disorder that causes progressive weakness to the heart and skeletal muscles. It is caused by mutations in a gene that makes an enzyme called acid alpha-glucosidase (GAA), which the body uses to break down glycogen, a stored form of sugar used for energy.
According to the Genetic and Rare Diseases (GARD) Information Center, Pompe disease affects fewer than 5,000 people in the U.S.
After his diagnosis, the team of pediatric experts working on Isaac’s case quickly developed a treatment plan: he would receive regular infusions of an enzyme designed to replace the GAA enzyme his body doesn’t make.
His first infusion at the Castle of Care took place in 2017. Isaac was just 3 years old.
For Meg and Christopher, their son’s diagnosis and the uncertainty of road ahead felt overwhelming and scary. But thanks to the team at Sanford Children’s and support programs fueled by philanthropy, they never felt alone.
Funded entirely through donations, Sanford’s Child Life program is designed to help ease kids’ fears and anxiety of medical care through education, therapeutic play and other activities.
“Wendy (our Child Life specialist) really helped us at the beginning. Isaac began getting infusions at age 3. Getting poked with a needle hurts and it’s scary, and the IV placement was a really difficult thing for him. So Wendy prepared a kit for us to take home so we could practice each of the steps with a fake needle. It helped take away the fear and helped it become more routine thing.”
World-class care, close to home
For the Habermans, the opportunity for Isaac to receive the care he needs close to home has made all the difference.
“We’re really grateful — not only that we have a diagnosis, but that we also have a treatment that’s available 10 minutes from our home. We both work full time, so the fact that the infusion center is so close means we don’t even take the entire day off of work. It means Isaac can go to some school on those days,” Christopher said, noting that staff do a great job coordinating all of Isaac’s care.
“He’s seen by a lot of specialists, from cardiology, to pulmonology, genetics and neurology — all the areas that deal with your muscles. The Castle staff does an excellent job coordinating appointments to maximize everyone’s time.”
‘I know they care about me.’
No child wants to spend time in a hospital or clinic. But for Isaac, his regular visits to Sanford Children’s are made easier thanks to the caring staff that always goes above and beyond.
“They’re nice and they’re really good at their job. I know they care about me,” he said. “On my 100th infusion it was like an entire party — they had cookies, mini golf, bowling. It was fun.”
“If someone else was just found out they had a rare disease, I would tell them the Castle will take good care of them, and it’s fun too,” Isaac said, recalling a Halloween party the staff held for patients and families.
“They had costumes, candy and games. My costume was a dinosaur inflatable,” Isaac said with a smile.
Christopher called the staff at Children’s beacons of hope and healing.
“We’re going on seven years of infusions, so Isaac’s basically grown up here. He’s celebrated milestones here, birthdays, holidays. When life happens, they’re just as excited for us or just as sad for us as our family is — they’re an extension of our family, essentially.”
Awareness and gratitude
The Habermans remain grateful for Isaac’s treatments, which will “continue forever or until there’s a better treatment or a cure,” Christopher said.
They’re also appreciative of Sanford Children’s and the Castle of Care — a hospital built thanks to philanthropy.
“I have a lot of gratitude that people a generation ago funded the Castle of Care, and that people a generation ago funded research so that there would be a treatment for Pompe disease,” Christopher said. “It’s amazing what people have given. When we found out Isaac was selected as the CMN Champion this year, it made me excited knowing that our little guy who has gone through so much can share his story to help others.”
100% of every gift helps care for local kids
When you give for Sanford Children’s, 100% of every dollar is maximized to its fullest potential — to help kids like Isaac reach theirs. Gifts support priorities like:
- Child Life, the school program, spiritual care and other services that are never billed to patients’ families
- Financial assistance to help families with the costs of meals, lodging and travel while their child is in the hospital
- Specialty camps
- Lifesaving pediatric equipment like ventilators, ultrasound machines and Giraffe OmniBeds, which mimic a mother’s womb for NICU infants
- And so much more
With your support, we can continue to fuel health, healing and hope for kids each year at Sanford Children’s Hospital in Sioux Falls. Please give for good today and be a part of more kids’ stories!
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