A Calgary family is raising funds for their eight-year-old daughter's brain surgery

A Calgary family is seeking funding for major surgery after doctors discovered an enlarged brain tumor for their eight-year-old daughter.

Olivia Danylenka is described as a happy and particularly intelligent child with good reading skills for her age, but she was recently diagnosed with a rare and aggressive brain disease called neurofibromatosis type 1 (NF1) last August.

The disease is often inherited through neurological disorders, affecting approximately one in 3,000 people worldwide. The tumors of this disorder are not malignant, but they grow on the nerves and affect both speech and motor skills.

This can cause dark spots on the skin similar to birthmarks (called cafe-au-lait spots). NF1 can cause tumors (neurofibromas) in or under the skin, in the eyes, or in the nervous system (brain and spinal cord).

Natalia Danylenka, Olivia's mother, said: “It all started in July when Olivia lost the use of her right hand.

“We went to three family doctors and none of them were concerned and we thought it was just an allergic reaction, but then we were sent for X-rays, a CT scan and then an MRI which showed he had a tumor on his head. »

BRAIN TUMOR HAS BEEN PUT

Olivia was diagnosed with a brain tumor in the thalamus part of her brain, and despite undergoing chemotherapy, it had doubled in size.

A slight pain in his hand prevented him from working at all, his right leg gradually weakened, and his speech was so slurred that he was often unrecognizable.

Olivia was diagnosed with a brain tumor in the thalamus part of her brain, and despite undergoing chemotherapy, it had doubled in size.

“Currently, our only option in Canada is to partially remove the tumor, which may only provide temporary relief with a 30% success rate,” said Danylenka.

“The tumor continues to grow, the symptoms worsen, and if we don't remove the entire tumor, it can become life-threatening.”

THE MEMPHIS EXPERT

However, after extensive research, the family contacted Dr. Paul Climo, a highly experienced surgeon at Le Bonheur Children's Hospital in Memphis, TN, who specializes in removing brain tumors with minimal risk.

“Unfortunately, the operation is not covered by the health care system of our province, and despite our best efforts, we were unable to secure funding for it,” Danylenka added.

A Go Fund Me to cover the $150,000 cost of the medical procedure has raised just over $21,000 as of Thursday.

“We want to thank everyone for their kind donations,” Danylenka said.

“Your support not only helps our situation, but also motivates us to move forward.”

According to the Alberta Health website, there is no cure for neurofibromatosis, but treatment can relieve symptoms.

“Some people choose to have large or very visible tumors surgically removed,” the statement on the website reads.

Surgery to remove tumors of the spinal cord, brain, or other nerves under the skin may be necessary if the tumors cause pain or disfigurement.

LIVING WITH NF1

An Edmonton couple is speaking out in hopes of educating others about the rare skin conditions they both suffer from.

Gail Appelgren and Tim Columbia were both born with NF1 and both have multiple benign tumors on the surface of their bodies.

Together, they hope to put NF1 patients in a difficult position with other families going through the same challenges.

“It's my dream to find a cure for this disease and to spread as much awareness as possible,” Appelgren said.

“We are now looking to put others together through the board with the Alberta Cancer Foundation.”

90 percent of Applegren's body was covered in cancer. She first started noticing rashes as a teenager, and while most of her growths were painless, some of them were very disturbing.

So far, he has had more than 40 surgeries because there is no treatment or cure for NF1 other than removing the tumor.

“People have lost hearing, vision, internal organs and limbs because the tumors grow into bones and substances. The tumor in my breast, I had it removed because it was so big I could stuff it in my pants,” Applegren said.

“I almost died in the operation because I lost so much blood that they couldn't remove the tumor completely because you have to get to the bottom of the tumor to remove it.”

A Go Fund Me to cover the $150,000 cost of the medical procedure has raised just over $21,000 as of Thursday.

PROGRESSIVE CONDITION

NF1 is a progressive condition that affects different people and causes constant growth of tumors throughout life.

According to Columbia, her parents and other family members never had the disease, but when she was born, she had a mutation in her genetic makeup.

“I have few strokes, but I have learning disabilities and really balance and coordination issues,” she said.

“My body was completely different in first grade, I only had a few lumps removed, but I always stay positive.”

Although NF1 can have a profound effect on a person's appearance, Appelgren and Columbia hope others will take a moment to understand their condition.

Since then, the pair has spoken at several schools in Alberta and encouraged others to learn more.

“We have neurofibromatosis, but we don't have it,” Appelgren said.

“NF1 has never stopped me from living my life to the fullest, I have two university degrees, worked for the Alberta government as a social worker for 31 years and I've played all kinds of sports.”