HI Mom Nadia Wright recently shared her family’s HI-Story about her two children, Oliver and Hannah, who were born with congenital hyperinsulinism (HI).
About the Wright Family
The Wright family lives in Swaziland, Africa. Oliver is five years old, intelligent, inquisitive, adventurous, sensitive, and loving. Hannah is three years old, funny, outgoing, stubborn, and cuddly. Oliver loves the outdoors and going on adventures, while Hannah loves animals and jewelry. Hannah and Oliver’s parents juggle their careers and raising two small children with HI. It is difficult, but they try their best to give their children a normal and full life.
Oliver and Hannah’s type of HI is unknown, and the family is currently waiting for genetic testing results. Both siblings were diagnosed early, but Oliver’s diagnostic process was more complex. He was diagnosed at eight days old and spent two weeks in the Neonatal Intensive Care Unit (NICU). Hannah was diagnosed almost immediately after birth, as her glucose levels were very low. She spent seven long weeks in the NICU. Hannah was on oxygen, could not latch, and would not take a bottle. The medical staff added different supplements to her milk which wreaked havoc with her sugar levels. This resulted in her pancreas producing even more insulin. Doctors were very concerned about her brain function at birth, but luckily her MRI was normal.
Currently, both siblings are on Proglicem (Diazoxide) for treatment. Their blood sugar trends are relatively stable, but they tend to drop in the late afternoon.
Hopes for Resources and Research
Looking to the future, the Wrights are hopeful for more affordable Continuous Glucose Monitoring (CGM) systems. There are no endocrinologists in Swaziland, so they must travel 600 kilometers (373 miles) to visit an endocrinologist for appointments and medical help. Hyperinsulinism is not very well known in Swaziland, making it difficult to get help. An HI tool that they would love is a more streamlined online resource for getting answers about HI and HI treatment in the future.
Rare Disease Month Magic at Mlilwane
In February of 2022, the Wright family took a trip to Mlilwane, their local wildlife sanctuary. The sanctuary is one of their favorite places to visit for a little bit of everyday magic. All the animals are tame and well taken care of, including the zebras. Zebras are the official symbol of rare diseases, so it is special for the family to get the chance to visit them and get so close to them in their natural environment. They enjoyed a picnic with donuts at the top of the mountains while visiting the zebras and the rest of the wild animals.