Burnsville Native Holds Benefit for Daughter with Rare Genetic Disorder

A Burnsville native is holding a fundraiser on June 2 to help pay for her 3-year-old daughter's medical expenses and to remodel her home to make it wheelchair accessible.

Scarlet Amelie was born with Schinzel-Giedion syndrome, a rare genetic disorder affecting cognitive and physical development.

“Prior to her birth we were prepared to expect enlarged kidneys and some physical abnormalities but otherwise planned for a normal healthy child,” her mother, Jenny Wagner, told Sun Thisweek. “As time went on, Scarlet’s medical issues progressed and her development declined.”

The Wagners' benefit will be heldfrom 2 p.m. to 5 p.m. June 2 at the Mediterranean Cruise Cafe in Burnsville and will include a silent auction, raffle, food, cash bar, vendors and more. Admission is $20 for adults and $10 for kids age 5 to 10.

The family has already raised almost $3,000 toward their $30,000 goal through a crowd-sourced fundraising website.

On the website, Jenny Wagner described her family's challenges:

Scarlet was born with an extremely rare genetic mutation known as Schinzel-Giedion syndrome. The condition is complex and involves epilepsy, kidney disease, severe developmental delay, breathing and feeding problems, physical abnormalities, impaired motor functioning, deafness, visual impairment, and abnormal brain growth. Scarlet has no independent movement and therefor is confined to a wheelchair.

As parents, we have put all of our effort into easing life for our sweet girl. We have made many financial sacrifices, modified our home, purchased a wheelchair accessible vehicle, and adapted our entire lives to bring down the barriers keeping Scarlet from normal life. With that being said, we are planning a benefit to raise funds to expand our home, which is split level, or build a new entirely wheelchair accessible home. It is our greatest wish and desire to create a home around Scarlet where she can be with her family without restrictions.

Additionally, we had our son Fritz in April of 2012 who was born with Retino Blastoma or eye cancer. We share this as a side note because we do not want to appear greedy. I, mom, have been forced to quit my full time job to care for my children and their full time medical needs. We could not have been prepared for this life nor were we equipped to manage it but there is not a second we would change. Our babies are worth every moment and sacrifice.