Congenital Hyperinsulinism Center

Hyperinsulinism Patient Stories

A diagnosis of hyperinsulinism brings with it unique challenges for each family it affects, and each family will cope in their own way. However, the experience can be made less overwhelming by hearing the stories of other families in similar situations.

Leila - BWS/HI

Born with BWS, Leila's hypoglycemia faded away and her blood sugar is being managed by diet alone

Read Leila's story

Jaylene, BWS/HI

Born with BWS, Jaylene's HI is medically managed through dextrose at night and with diet during the day

Read Jaylene's story

Lainie - focal HI

Lainie's focal HI was confirmed with a PET scan and cured with surgery at CHOP

Read Lainie's story

Lachlan - focal HI

Traveled 35 hours from Perth, Australia, for treatment of his focal HI

Read Lachlan's story

Mackenzie - focal HI

Traveled to CHOP from Massachusetts for treatment and surgery of her focal HI

Read Mackenzie's story

Nathaniel - focal HI

Traveled from Georgia to CHOP for surgery to treat his focal KATP HI

Read Nathaniel's story

Rianna - diffuse HI

Rianna was born with diffuse HI and had 98 percent of her pancreas removed in infancy

Read Rianna's Story

Natalie - HI/HA

Diagnosed at 2 weeks old with HI/HA; Natalie came to CHOP from California for treatment

Read Natalie's story

Max - diffuse HI

Max had a pancreatectomy at 5 weeks of age to treat his diffuse hyperinsulinism

Read Max's story

Katelyn - HI/HA

Katelyn, her sister and her father have HI/HA. Learn how they're giving back by participating in research at CHOP

Read Katelyn's story

Charlotte - diffuse HI

Charlotte's HI is being medically managed, eliminating the need for major surgery

Read Charlotte's story

Cooper, BWS/HI

Cooper took medication to manage HI. At 20 months old, he’d outgrown the disease

Read Cooper's story

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Matias Velez's Story Featured on Fox 29

Matias and his family traveled from Ecuador to CHOP for a life-saving surgery to treat his focal HI.

Watch his story on Fox 29 News»