FARMINGTON — Mickey Mouse is a favorite of little Addilyn Davis.

Mickey Mouse Clubhouse characters “put a smile on her face in spite of the intense pain that she is enduring,” according to her family.

At only six months old, Davis was recently diagnosed with Krabbe Disease and faces a shortened life as there is no cure or treatment for the genetic disorder of the central nervous system.

Her parents, Kyle and Jamie Davis of New Sharon, and family want her to see the real Mickey on a trip to Disney World before her sight and hearing is affected by the disease, Grandmother Marti Davis said.

A benefit dinner and dance to help fund that trip and pay future medical expenses is being planned for Saturday, March 24, by family and friends. The meal takes place from 4:30 to 6:30 p.m. with the dance following from 6:30 to 11 p.m. in the South Dining Hall of Olsen Student Center at the University of Maine at Farmington. A 50/50 raffle and a silent auction will also take place, she said.

Addilyn weighed slightly more than six pounds at birth. Just over six months later, she’s now at 13 pounds. She’s had difficulty gaining weight, keeping formula down and over these few months, has been extremely fussy, Davis said. Fussiness, the family now knows, is caused by pain.

It was a fussiness that parents and grandparents couldn’t understand. Her pediatrician didn’t realize and told them she’d grow out of it by nine months.

But, there were other signs indicating there must be a problem, Davis said. The baby was often tightfisted. Her arms and legs were very stiff with little flexibility. Changing a diaper could be a challenge because the legs were so stiff. Sometimes she’d shake her arms for a few seconds, unable to stop.

Last month, she was hospitalized with respiratory symptoms. The doctor on call at the hospital began to question the signs she observed and did some research. She questioned if it was cerebral palsy and sent the family to a Portland neurologist.

Two weeks ago the family received test results that changed their whole world.

Krabbe disease is a rare condition affecting one out of every 100,000 people in the United States. It was named after the doctor who discovered it in the early 1900s. Both parents must have the faulty gene for the child to inherit the disease.

Along with muscle stiffness, symptoms range from vision loss and eventual blindness to hearing loss, feeding difficulties, failure to thrive, irritability, fevers, vomiting and a potential for seizures.

“The doctors thought her vision was already affected but she’s very alert and will turn her head and look at you if you speak to her from the side,” Davis said.

With early onset, most children with the disease live only 12 to 24 months. Some have been helped with stem-cell therapies but by the time a baby reaches six months, doctors say the disease has usually progressed too far, she said. More testing is planned to confirm that in Addilyn’s case.

Since the diagnosis, medication is helping Addilyn with the pain, making her a little more playful.

“She loves to watch Mickey Mouse,” Davis said.

Different formulas were tried and she’s now on one that she can keep down.

She’s too young for organizations like Make A Wish to help. They want the child to be two or three and able to make their own wish. The family understands that, she said.

While staying strong, the parents, fortunately, have a lot of family and friends lending support, Davis said.

Tickets, $10 per person or $18 per couple, for the dinner/dance are available at the door, Douin’s Market in New Sharon, Goodtimes Unlimited and Trantens Market, both in Farmington.

abryant@sunjournal.com

Copy the Story Link