Fundraiser held to help baby with rare disease

CARSTAIRS - Local restaurateurs at Villa Maria are put together a fundraiser to help a young Carstairs family with mounting bills as they care for a seven-month-old with a rare disease.

Sierra Kiem is currently receiving expensive treatment and medication for mosaic malignant migrating partial epilepsy of infancy. The condition is very rare, making treatment and research quite expensive.

The benefit was to take place July 30 at Carstairs Community Hall starting at 5:30 p.m. and featured a three- course meal, live entertainment and a silent auction.

Emily Kiem said she and husband Blayne are very grateful for the support of the community. They are also appreciative of the owners and staff at Villa Maria for helping them out with the fundraiser.

"We met them maybe a month ago and we feel like they're family," said Emily. "It's really nice of them to do this for us. They want to do another one as well after they see how this one goes."

Emily said they've been promoting the fundraiser. They've also been acquiring items for the silent auction.

"The response from the community has been amazing," she said. "People have been so awesome; giving us so much stuff for the auction."

The money raised will go towards helping the family with medical bills, medicine and formula cost, and help with testing and research, said Emily.

"It's $400 to $500 a month just for the formula and medicine," she said. "We have twice a month trips to the city. They told us it'll cost up to $200,000 for the research. We're trying to raise the money for that. They have to do research just for her to figure out the optimal medicine she needs to slow or stop her seizures."

Emily said her daughter Sierra began having seizures shortly after she was born.

"They brought her straight to children's hospital from Olds," said Emily. "They did testing; everything was normal with her. They couldn't figure out why she was having her seizures. They tried dozens of epileptic medications and none of them worked."

After finding a medication that finally worked, the Kiems returned home.

"After a week the seizures picked up again," said Emily. "They tried her on more medications. The second time we were at the hospital the doctors came to us and said this is most likely what she has, which was at the time just malignant migrating partial epilepsy of infancy. That was the end of January, I believe. We said, if this is the outcome we want to live at home."

The Kiems went home with baby Sierra. Shortly after, the doctors did more blood work and were able to do genetic testing, which determined Sierra had mosaic malignant migrating partial epilepsy of infancy.

"They told us she was only the second child in the world to be diagnosed with that," said Emily. "Even the other child is different than her because everyone is different and have different genes."