LAKE FOREST – Police cars blasted their sirens as they approached Liam Cohen’s home on March 22, but instead of putting him in handcuffs and hauling him to jail they gave the three-year-old a badge of honor.
The police involvement began when Lake Forest Police Department Officer Brett N. Marquette was working on a car accident across the street from Liam’s house. When he saw the little boy, Officer Marquette went over to say hi. He asked Liam’s mom, Kelly Cohen, why Liam was in a wheelchair, and she told him her son has a rare bone disease called McCune Albright Syndrome (MAS) with Fibrous Dysplasia (FD).
“This is a progressive disease that has caused multiple hospital visits, broken bones, non-cancerous bone tumors, many lifelong endocrine disorders, heart issues, countless sleepless nights and many stomach problems. There is no cure and very minimal treatment for his condition,” she said.
The next day, Officer Marquette rang the doorbell and asked Cohen if he could come back with some friends to see Liam. He later returned with four other members of the LFPD and goody bags filled with miniature police cars and other important accessories that every officer in training needs. They also deputized Liam’s big sister, five-year-old Sarah, who takes very good care of her brother, said Cohen.
Officer Steve Huck and the rest of the team delighted in seeing Liam and Sarah excitedly rifle through their goody bags with Officer Marquette. They also took the children outside to see the police cars and turn on the sirens.
“This job’s not about writing tickets, that’s part of it, but this is what it’s all about,” said Officer Huck.
Liam’s family is constantly amazed by the boy’s strength and bravery. “One day he broke his leg in the library and there’s a picture of him smiling. He’s so tough,” said Cohen.
Liam has nine hours of therapy a week and responds well to water therapy treatments. He also attends pre-school in Lake Forest.
His mom continued, “On bad days he’ll say, ‘Me can’t walk,’ and that means his leg hurts. The tumors in his spine are so bad that he needs to have surgery, but he’s too little, so he wears a back brace 24 hours a day to postpone (back) surgery for as long as we can. If he has it too soon, his trunk won’t grow.” Liam is in a wheelchair about 70 percent of the time.
Kelly is a pediatric nurse and her husband, Justin, is a urologist. They learned of Liam’s condition at five weeks, but Cohen said “it’s not supposed to be diagnosed as an infant. It’s usually discovered later after children start breaking bones.”
Through Facebook Kelly found another child from Canada who has MAS and FD. The families have been a source of comfort to each other.
The Cohens also have found comfort among friends and neighbors in Lake Forest. “When he’s had a bad pain day, I’ll post on Facebook that I need visitors with dogs and people just parade their dogs here,” she said.
“After spending the last three years seeking out the world’s expert physicians to treat him we have continually heard the same thing: Liam has one of the most profound cases anyone has ever seen and there is not enough research on the disease,” said Cohen.
This led to their involvement in the National Fibrous Dysplasia Foundation. Kelly was recently elected to foundation’s the Executive Board.
“We are starting from scratch and doing the basics by trying to fund with major grants,” she said. “We’re in the process of launching the first ever patient registry, and in the planning phase of organizing a fundraising event in Illinois.”
In the next few weeks Liam will have two rods placed in his femur (thigh bone), and he will undergo several weeks of rehabilitation. Through it all, he is wise beyond his years, and has never lost his sense of humor. His mom proudly conveyed this quick-witted dinner table conversation:
“A couple of days after we ate corned beef for St. Patrick’s Day, Liam wanted to eat ‘big corn,’ which we figured out meant corn on the cob. We then asked him what he calls the niblets of corn on his plate next to his hamburger, and he quickly replied ‘corn beef.'”
For more information on Fibrous Dysplasia visit fibrousdysplasia.org.