Fundraising, Awareness Efforts Continue Even After Crystal's Death
Crystal Masionis, 35, died last week of a brain tumor. Now her husband Daniel Masionis is raising their sons and caring for their daughter Eva, who has special needs due to a rare disorder called CHARGE Syndrome.
Crystal Masionis was known for championing causes. She gave tirelessly to other families facing cancer or battling CHARGE Syndrome, just like her own daughter Eva.
Crystal died on June 22 at age 35. She had been at Rainbow Hospice in Park Ridge. The funeral was held at Strang Funeral Home in Grayslake.
"There was so much Crystal did to support CHARGE Syndrome and cancer awareness that I'm not even sure where to start," said her husband, Daniel Masionis of Round Lake Beach. "When Crystal was pregnant with our daughter Eva, the doctors told us she wouldn't make it to birth. This news devastated both Crystal and I. But she would not give up on Eva and decided to keep the baby and hope for a miracle."
He said they did get that miracle when Eva was born, "but it was a hard road with multiple birth defects and several surgeries."
Eva was diagnosed with CHARGE Syndrome shortly after she was born. "Crystal, myself and many of her doctors had never heard of this syndrome before," Masionis said. "Crystal ran fundraisers for the CHARGE Syndrome Foundation and raised awareness wherever she could. Due to her efforts, many families online started to come together reading Crystal's blogs and requesting her as a friend on Facebook."
He said Crystal became the "go to" person for support and questions for CHARGE families. In May 2010, the family learned they had to deal with another huge medical issue — Crystal was diagnosed with melanoma.
"Again, we were hoping for a miracle," Masionis said.
The melanoma started as a small dark spot on the bottom of her right foot, he said.
"She got the devastating diagnosis that it was cancer, despite the doctor removing the black mark on her skin. It was in the surrounding tissue and would have to be removed," Masionis recalled.
In addition to caring for Eva, and their two older sons, they were now dealing with cancer. They moved in with Daniel's parents when Eva was born to help care for the kids. Now, Crystal had a new fight of her own.
They learned the cancer had spread up into Crystal's leg. She underwent surgeries and yearlong treatments of Interferon A, which included terrible side effects. But even that didn't stop Crystal.
"Once she had been able to handle the side effects and had healed from her surgeries, she started planning melanoma walks and raising funds to support cancer awareness and research," Masionis said. "Honestly, I cannot say how many walks we have done, there have been so many."
Crystal was balancing CHARGE Syndrome fundraising and melanoma fundraising while battling the cancer and the side effects of the drugs. A few months after she came off the Interferon A, Crystal noticed several lumps in her leg.
They found out the cancer had spread into her lungs. She underwent more and more treatments, and began having seizures, Masionis said.
"They did a MRI and found the cancer had spread to the lining of Crystal's brain," he recalled. "She had to get 10 days of radiation to her brain and five days to her spine."
"Even then, she was still doing walks for cancer," Masionis said.
Crystal passed away June 22, surrounded by friends and family.
"We did not get the miracle we wanted but we were blessed with time for friends and family to come over and spend time to reminisce and say goodbye," Masionis said. "I love Crystal. She was an amazing wife, mother, and friend to not only me but the whole CHARGE community."
Daniel Masionis has taken over the Crystal Masionis Cancer Foundation, established by their friend Karen Rock.
Rock established a fund for the Masionis family.
"(Crystal) has given so much of herself to her friends, family and the CHARGE community that we would like a chance to give back and support the future of her loving family," Rock wrote on the fundraising page: http://www.gofundme.com/Crystal-Masionis#description.
Donations are still being accepted.
Family friend Mark Bushey put it this way: "Crystal has been one of the strongest women I have ever known. She has spent the last seven years trying to bring awareness to her daughter's genetic disorder, CHARGE syndrome. Now we are trying to bring awareness to Crystal's story because her family needs our help."