Lake Forest’s Justin and Kelly Cohen are parents to 5-year-old Sarah and 4-year-old Liam. Kelly is a pediatric nurse and her husband Justin is an urologist with UroPartners, LLC. “Justin and I both entered the medical field because we are passionate about helping people and doing things to better the lives of others,” says Kelly.
Daily life changed for the Cohens when they realized something was wrong with Liam when he was only five weeks old. Visiting doctor after doctor to find answers and seek medical advice for their baby, it was discovered that Liam has McCune-Alrbright Syndrome (MAS) with a rare bone disease called Fibrous Dysplasia (FD). FD is a progressive bone disease characterized by abnormal growth and lesions in the bones and MAS is a skin and endocrine (hormonal) disease. Many cases of FD are not diagnosed until someone suffers a broken bone, needs X-rays, or is a little older.
“FD and MAS are progressive diseases that lead to multiple hospital visits, broken bones, non-cancerous bone tumors, several lifelong endocrine disorders, heart issues, countless sleepless nights due to pain, and many stomach problems,” Kelly says. “At this time, there is no cure and little treatment for Liam’s condition.”
Liam and his sister Sarah are both students at Sheridan School. Liam is in pre-school and Sarah will enter kindergarten in the fall. Together, they made the news in March when local Lake Forest police officers paid the family a visit after Liam happened to meet Officer Marquette when he was working on a traffic accident near the Cohen’s home. A few days after, Officer Marquette and a few others let the kids sit in the squad car, turn the lights on, and brought the children gifts.
In spite of the daily nausea and pain Liam experiences, he still has a fun sense of humor, brave outlook, and a sweet smile on his face. “He’s very smart and is wise beyond his years,” Kelly says.
He uses his wheelchair about 70 percent of the time when his legs hurt and he wears a back brace for support because he has many tumors on his spine that need to be removed but they need to delay surgery for as long as possible. Liam’s favorite color is green and he is known to love a visit from dogs when he is having a bad day.
Over the last four years, the Cohens have researched and looked for experts in MAS and FD care, finding it necessary to travel to the East Coast for help. What the Cohens continually hear from the medical community is that there needs to be more research to find a cure. The family is working with the The National Institute of Health in Washington D.C. and Liam is currently enrolled in an official study of the disease.
Up until now, Kelly and Justin have been somewhat private about their experience with Liam’s condition except for close friends. But personally experiencing the lack of FD and MAS research, they have become ambassadors for change. Kelly currently serves on the Executive Board of the National Fibrous Dysplasia Foundation as its secretary.
“The National Fibrous Dysplasia Foundation’s mission is to work with the medical and scientific communities to provide support for families who suffer from the disease and fund and encourage research to aid in treatments and find a cure,” Kelly adds. Since the disease is so rare, it is often hard to find others going through the same experience. Kelly has found support through local friends and Facebook, where she found a Canadian family with a child diagnosed with MAS and FD.
“The support we have received in the community has been overwhelming,” Justin says. “The people in our town are so supportive of Liam and our family.” To that end, Kelly planned a local fundraiser to educate and build support for the National Fibrous Dysplasia Foundation that was held in June at the Gorton Community Center.
As Kelly planned the event, she received an overwhelming reaction from local businesses and members of the community. Good friends Andy and Lisa Duran and Nicole and Jonathan Quick were instrumental with their support for the local fundraiser. “Andy’s experience with LEAD has been such a great asset for us,” Kelly says. “He knows how to work to raise money and build awareness within the community. I had plans to have silent auction items and more, but we stuck with a straightforward dinner event with a video of Liam’s life to share his story with the guests. Liam had major surgery in April and was critically sick and hospitalized in May for two weeks, so we kept things simple this time around,” explains Kelly.
Forest Orthodontics has featured Liam on its Facebook page, pledging donations of $1 per like and $2 per share towards the fundraiser. Duxler Automotive has also pledged funds.
Northwestern Lake Forest Hospital is a sponsor for the event and local residents Andy and Veronica Hunt also helped make the event a success through underwriting. The Cohens are immensely grateful to the community for helping raise awareness of McCune-Albright Syndrome and Fibrous Dysplasia and supporting their family.
To read more about the National Fibrous Dysplasia Foundation or to make a donation, visit fibrousdysplasia.org/bettertomorrow