Locals Seek Cure For “Sweet Pea”
NEW BREMEN — Adriane Schmackers, or Sweet Pea as her parents call her, has just learned to speak.
The 4-year-old girl can now learn to say the words “mom” and “dad” and communicate with her friends and family.
“She’s actually been doing really well,” said aunt and co-owner of New Bremen Massage Clinic Linda Baker. “She understands you when you talk to her; she’s a great kid. She listens well.”
Two years ago, when Adriane’s development began to slow, her family discovered she had a rare genetic disease called MPS. Sweet Pea is missing an enzyme that helps break down toxins the body produces every day. Instead, these toxins build up and attack every system in her body.
By age 5, she may lose the ability to speak and by age 6, she may no longer be able to walk. Adriane may not live to see her high school years.
There is no cure or treatment for this disease, but recently Adriane’s mother heard about a clinical trial set to begin this winter at Nationwide Children’s Hospital in Columbus for children who have MPS.
Baker said after Adriane’s mother learned about this trial, she started a GoFundMe.com account to try to raise money for the trials. From there, the idea of the MPS Fundraiser was born. Baker said she and co-owner Karla Thornton have had a much smaller fundraiser like this before, but that this will be the first major attempt on their part to raise money for the trials.
The idea blossomed into a family event, which will take place from noon to 4 p.m. July 19, at the New Bremen Massage Clinic, 103 W. Monroe St., in New Bremen. Walk-in sessions will be available for the four-hour block, and massages, hair stylings, mini manicures and reflexology and paraffin dips will be sold. Tickets will be sold for games for children of all ages, a coloring contest, face painting, hair braiding for kids, tattoos and more.
Cookies, snacks and root beer floats will be available, and as purple is the MPS color, purple lemonade will be served.
From noon to 2 p.m., Miss Teen Ohio and New Bremen resident Rosie Westerbeck will be available for any children who attend the event to pose for pictures with her. Baker said children who want to dress up can do so, as the event will provide special outfits. Businesses in Mercer, Auglaize and even Shelby counties have donated prizes for the raffle that will take place at the event and have been eager to help, Baker said. Items to be raffled off include purses, gift cards from local restaurants, ice cream shops, flower shops and more, Ohio State merchandise, kids toys, home decorations, Mary Kay baskets, massage gift cards, photography gift certificates and more.
Baker said raffle tickets can be purchased at the massage clinic, or by calling 419-629-2717. The price is $1 for one ticket or $5 for six tickets. Checks for raffle tickets can also be mailed to the massage clinic, she said.
T-shirts are being provided by Home Stretch in St. Henry for $12 each, and can be ordered until July 21 by calling either the massage clinic or Home Stretch at 419-678-4282. Baker said the shirt is white with black and purple writing and read, “Saving SweetPea.”
She has been overwhelmed with people volunteering to help however they can.
All proceeds from items that are normally on sale at Baker and Thornton’s business will be donated to the hospital if they are purchased during the fundraiser as well.
“The merchants who have different items in here that we help them sell have been very good about (saying), ‘Oh yeah, just donate it all,’” Baker said. “That’s kind of their part. And then volunteers from different hair places have said, ‘Yeah, we’ll volunteer our time and our talent.”
Baker stressed that every penny collected will be donated to the hospital toward funding the clinical trials. Most trials for MPS patients are primarily funded through family and friends of the children who suffer from the disease, Baker said, and the hospital told her it was going to take $2.5 million for this particular trial.
Her hope for the fundraiser is not only that they collect a significant amount to donate, but also that it helps raise awareness about the rare disease.
“Because it is genetic, it is in the family, so it will pop up again,” Baker said. “That’s one of the other hopes for that fundraiser — that we can get some money to this hospital to help future generations.”