MORRIS – When 10-year-old Emmalyn Freeze has friends over, she’ll ask them if they want to sit and watch a movie after playing for a couple of hours.
Emmalyn, of Mount Morris, has an active cerebrospinal fluid leak in her spine. It gives her headaches when she’s upright and moving. Lying down helps with the pain.
“I try to give myself a little relief,” Emmalyn said. “I don’t want them to have to go home.”
She and her brother, Colton, were diagnosed with Chiari malformation and syringomyelia at a young age.
Chiari malformation is a condition in which part of the brain slides down into the spinal canal and blocks the cerebrospinal fluid from flowing as it needs to cleanse and nourish the spinal cord.
Syringomyelia is a cerebrospinal fluid-filled cyst inside the spinal cord that forms a blockage of fluid.
Both children had a decompression surgery to lift the brain and restore flow to the spinal canal. Colton was 5 and Emmalyn was 3.
Colton now is 12, and his surgery appears to have been successful. Emmalyn wasn’t quite as lucky. She has an underlying connective tissue problem and other underlying conditions that weren’t addressed prior to being decompressed.
Because of those unaddressed conditions, the surgeon removed too much bone from her skull, the decompression failed. The result is a life of continued pain, marked by 33 surgeries. Her upcoming 34th will be an attempt to stop her CSF leak with glue.
“If it doesn’t work or hold, they’ll probably have to surgically open up her back, which we’re trying to avoid at all costs,” said her mom, Stephanie Freeze. “We don’t want to put her through more surgeries than she’s already been through.”
In 2019, Emmalyn and Stephanie were out of town dealing with medical issues all but 124 days. They were in New York for 3 months straight. After changing doctors in July, Emmalyn has had to fly to California for 8 days every month for attempts to stop the leak.
On the plus side, Emmalyn enjoys the beach. Every chance she gets, takes Giraffy, her stuffed giraffe that takes up an entire suitcase.
She never cries before a surgery.
“It gets tiring,” Stephanie said. “It’s financially hard. It’s emotionally hard. It makes it easier with her just because she has a very optimistic attitude. She’s very brave, very strong. She faces each surgery with a smile.”
Fatigue, leg pain, and memory issues have been some of the side effects of Emmalyn’s condition. One of her tougher times came years ago when her spine had to be fused from the zero to C4 vertebrae because too much bone was taken in her first surgery, leaving her spine unstable. It included donor bone, screws and rods in her head, and a brace, and caused an infection she fought for 6 months.
The bone finally fused and the hardware was removed from her head.
Frustration has built for the Freezes after so many times hoping that the next surgery will be the last. Stopping the CSF leak and helping Emmalyn lead a more normal life is the goal.
“She’s had so many surgeries where we’ve heard, ‘This will be it. This is the one. You’re going to see a new Emmalyn after this,’ ” Stephanie said. “And then something else fails.”
When they’re out of town, Colton stays with his father, Matt, and Stephanie’s mother, Helen Pfoutz. They have been instrumental in supporting the family, emotionally and financially. Matt owns Blake Automotive in Mt. Morris and works as much as he can to cover medical costs.
The community has stepped up as well. There have been multiple fundraisers over the years, including one at Blackhawk Nutrition in Oregon a week ago. Others have donated to the family’s GoFundMe account (www.gofundme.com/EmmalynStrong) to help with medical costs.
Before her fifth surgery, a card drive was held that asked members of the community to send well wishes to Emmalyn. She got more than 750, including one from every state except Alaska and even one from Japan.
“It makes my faith in humanity bigger,” Stephanie said. “You see all the bad things in the world. And you see the humanity of all the people that come forward and see her bright smile or see what she’s going through and want to help.”
Emmalyn attends Faith Christian Elementary School in Grand Detour. She enjoys science, arts and crafts and baking. Her dream job is to be a Child Life Specialist, a person who helps hospitalized children cope with the challenges of illness, and disability.
She can’t play contact sports, but she enjoys watching softball and volleyball and hopes maybe to compete one day. Luckily, her favorite sport doesn’t involve much contact.
“I want to run a marathon someday,” Emmalyn said. “I really like running. But most of the time I can’t do it.”
During recess, kids at her school often play soccer. With her CSF leak, she’s forced instead to walk around the gym and watch. She hopes that will change with surgery number 34.
“If it does work, I can do things as long as I want,” Emmalyn said. “I don’t have to stop.”