They seek answers about condition that caused sudden death of daughter, 6, at local skating rink

By Jennifer Eisenbart

Staff Writer

Everyone whose life has been brightened by a young child can identify with the laughter Troy and Amber Weis remember from their daughter, Grace LeeAnn.

Troy called it his daughter’s “belly giggle.”

“She loved life,” Troy said. “She loved her older brother. She was his best friend. Just a beautiful, beautiful girl. Just loved everybody.”

Amber added, “She wanted to make everyone happy.”

Grace LeeAnn’s life came to a tragic end Sunday night after the 6-year-old collapsed at a local skating rink.

The 6-year-old had been skating at Capelli’s Traxside Skating in Burlington Sunday for about 15 minutes when she came off the surface and told her mother she wasn’t feeling well.

She collapsed soon after and went into cardiac arrest. Rescue personnel were called to the scene at about 5:45 p.m., and CPR was performed on scene. Weis was then transported first to Aurora Memorial Hospital of Burlington, and then later to Children’s Hospital of Wisconsin in Wauwatosa.

She was pronounced dead at 10 p.m. Sunday night, according to Racine County Medical Examiner Michael Payne.

“It’s every parent’s worst nightmare,” Payne said.

Payne said Tuesday that an autopsy had already been performed, but it would be weeks before results came back. Payne added that there was no reason to suspect anything other than natural causes, and there was no accident or fall that precipitated Weis’s collapse.

The medical examiner added that a team of cardiologists – both from Children’s Hospital of Milwaukee and from the Milwaukee County Medical Examiner’s Office – were working on the case, and were also consulting with the Mayo Clinic.

Troy and Amber Weis, who live in Elkhorn, said Tuesday their daughter had suffered on two different instances of fainting spells, which led them to various doctors to search for answers.

Eventually, after the second episode a year and a half ago, Troy said his daughter was diagnosed with what he called a “stomach migraine” – basically severe stomach pain that led to her blacking out. All other testing proved negative, and Grace LeeAnn was placed on beta blockers.

“Since she has been on this medication, she has not had an episode,” said Troy, who added that his daughter was due for follow-up tests in a few weeks. She was diagnosed with a heart murmur at birth, but the family was told it had no correlation with the fainting episodes.

Troy said there was absolutely no indication Sunday’s tragedy was coming. First responders, Burlington Area Rescue Squad and Medix Ambulance all arrived on scene quickly, and Grace LeeAnn was transported to Burlington Memorial. Because of weather conditions, her transfer to Children’s Hospital was done by ambulance, rather than helicopter.

“(Children’s) did the best they could with our daughter Sunday night,” he said.

“They did everything they could for our daughter, and gave her every chance possible,” Troy said. “There’s no words to explain our gratitude for them.”

The family had nothing but praise for the Children’s Hospital system, both in Wisconsin and in Minneapolis-St. Paul, where their 8-year-old son, Christian John, has been treated for Saethre-Chotzen Syndrome – a genetic condition that causes premature fusing of the bones.

Because of what happened Sunday – and because of the “love of life” shared by them and their daughter – Troy and Amber wanted to speak out, and are actively pursuing an answer to what happened to Grace LeeAnn.

“We can use this to save any other parents the grief we are feeling right now,” Troy said. “It is such an unbelievable feeling to lose your child. If we can stop this from happening to anyone out there … this would make it somewhat bearable.”

The couple said support from friends, family and parishioners at St. Francis DeSales Church in Lake Geneva has been helpful. They thanked those people, as well as all the various medical personnel who tried to help Sunday. The couple already has started a foundation in their daughter’s name, though as of now, there are no immediate plans as they work their way through their grief.

Visitation for Grace LeeAnn will be Friday at Derrick Funeral Home in Lake Geneva from 4-8 p.m., and services for her are at 11 a.m. Saturday at St. Francis DeSales Church.

“Love will help,” Troy said. “Love will heal.”

He also added that his daughter touched many people throughout her life – people that are just now coming forward. Fellow students, parish members and others have reached out to the family and let them know how Grace LeeAnn brightened their lives.

“She touched so many lives in six years, who knows what could have happened in 20, 30 years?” Troy added.