This fundraiser is being organized to help support the Dulek family as they deal with the ongoing medical needs of their youngest child, Desmond.

Desmond suffers from seizures due to medical conditions, which are listed below.

Desmond was hospitalized for multiple days in September, in October, in November and again in December of 2022. Because of all of the hospitalizations, mom was forced to leave her place of employment in December, which was the family’s primary source of income.

Desmond has been diagnosed with a very rare genetic disorder called Developmental Epileptic Encephalopathy type 50, Cerebral Palsy, Cortical Visual Impairment, Microcephaly, thickening of the gray matter in his brain, hypotonia, and a tiny brain abnormality located in the occipital lobe.

Desmond is doctoring at Mayo and Winona Health as well as receiving in home services from early intervention.

The Dulek family travels from Winona to Rochester and back, multiple times per week for appointments at Mayo Clinic, each time spending most or all of the day there.

There is a medication called Uridine which was covered by insurance, which insurance will no longer covered after being switched by the state from one insurance plan to another. The family has had multiple appeals and will continue to fight for the change!

This disorder is so rare that there are only a handful of people in the WORLD diagnosed since it was first identified in 2015.

The medication which was specifically treating the rare genetic disorder AND improving the rest of Desmond’s overall development and quality of life costs 28 THOUSAND dollars PER MONTH and, as you can guess NOT in the budget for the family.

The family has found a substitute over the counter medication which is less effective, but similar enough to lessen the effects of his disorders at a very fair price. This medication does help, but does NOT eliminate seizures. Seizures are not only scary and risky alone, but also stand in the way of improvements in other aspects of Desmond’s health and life.

Parents Bre and Brian appreciate any support the community can give to help them during this difficult period. Please consider making a monetary contribution and sharing this GoFundMe on your social media.