Book signing event is Saturday
SLAYTON — A Marshall author will visit Slayton on Saturday to sign copies of her book about a life-changing journey she and her husband have shared with their daughter.
Sonja Van Leeuwe, a Marshall resident, will be sharing “A Balloon in the Snowstorm,” the story of daughter Madison’s battle with Carbamoyl Phosphate Synthetase (CPS) deficiency. She will be signing copies from 1 to 3 p.m. Saturday at Read It Again Books, 2525 Maple Ave., and copies will also be available for purchase.
Baby Madison was born during a blizzard on Christmas day in 2009 in southwest Minnesota. Everything seemed perfect, until Madison had trouble breathing and turned blue only hours after she was discharged from the hospital. As she was rushed to the ER, her family’s emotional journey began.
The doctors at St. Marys Hospital in Rochester suspected Madison suffered from a metabolic condition called CPS deficiency.
“When she was at St. Marys Hospital, they gave us a notebook just to keep track of everything because there was so much going on,” Van Leeuwe said. “I just started writing everything down for our own record.”
CPS deficiency is an inherited disorder that causes ammonia to accumulate in the blood.
“The disease is in the liver,” Van Leeuwe explained. “Basically, she is missing an enzyme that breaks down protein. The ammonia was just built up in her system and she had to have dialysis several times.
“The ultimate goal was to have her get a liver transplant,” she added.
Van Leeuwe stated that her husband pushed her to write.
“He would tell me, ‘You should write a book,’ but I was reluctant to,” she said.
“It was scary because I didn’t know the ending or how this would go, but I just kept writing, thinking that maybe it’ll help someone else going through this.”
Since being published in 2012, Van Leeuwe has received feedback from readers all over the country and the world.
“I actually received an email from a woman from Spain last week who read my book, and I also connected with a woman from New Jersey through a support organization,” she said.
Van Leeuwe explained there is a support group for enzyme deficiency called Urea Cycle Disorders.
“A urea cycle disorder is caused by a mutation that results in a deficiency of one of the six enzymes,” she said. “CPS is just one of the enzymes that could be missing, but it is one of the rarer deficiencies.”
While she wouldn’t reveal the ending, Van Leeuwe hopes that the book helps and inspires anyone who reads it.
Throughout Madison’s experience, she touches the lives of many and initiates many transformations within the medical community.
By joining Eric and Sonja on Madison’s Journey, readers discover the powerful message that Madison was sent to reveal.
Daily Globe Reporter Erin Trester may be reached at 376-7322.