ESSEX — Karen Mullen was a primary caregiver to her son and granddaughter, who lives with disabilities. But a sudden onset of severe medical problems has now hindered her ability to provide and care for her own.
“Karen has always been an unbelievably caring soul to students, parents and staff alike,” said her friend and former co-worker Carol Privitera. “And she forever has a smile on her face. But life has never been easy. Her strength, determination and willpower continue to leave me in awe.”
Muller gave birth to four children and now has several grandchildren.
One of her granddaughters, 10-year-old Mia enjoys watching Frozen, playing with her peers, and meeting new people.
Mia also lives with spastic quadriplegia cerebral palsy, cortical vision impairment and microephaly.
Spastic quadriplegia cerebral palsy is a condition that affects all four limbs and makes it impossible for Mia to walk and take care of herself. The extraordinarily resilient child has had two surgeries on her hip that were successful, and her family is hopeful that the third surgery will relieve her of some pain.
Being born with cortical vision impairment, Mia can only see for about ten feet. Microephaly causes the child to experience seizures, intellectual disabilities and a smaller than normal head.
“While this is a lot for a 10 year old, Mia refuses to be held down,” Mullins said. “Mia army crawls around the house, reach for her toys and plays with her sister. We remain hopeful that one day, with the help of physical therapy, that she could walk with assistance.”
Mia’s father Steve was diagnosed with a germinoma brain tumor at 11 years old.
“Germinomas are very rare,” said Mullins. “Steve was the first child to survive this type of cancer at University of Maryland and only the second to have been diagnosed with it. Steve fought so hard and beat it. We were elated. Unfortunately, after nearly 17 years of being in remission, the cancer came back very aggressively.”
Steve had tumors all over his brain, Mullins explained. “He was again treated at the University of Maryland, where all but one persistent abnormality continues to haunt us.”
The doctors at University of Maryland are amazed at Steve’s ability to survive such severe challenges with his body, but have yet to inform his family of expectation for the future. The father of a child already frought with disability, Steve has seizures, brain damage and glaucoma that makes him legally blind.
Mullins’s son and granddaughter both rely on her to care for them.
“But Mia and Steve’s reliance on me, unfortunately, is no longer viable,” she said. “I was recently diagnosed with multiple myeloma.”
Multiple myeloma is a rare blood cancer that causes bone lesions in the ribs, hips and spine, she explained.
“This results in weakness, pain and the embrittlement of my bones. I was once able to help my son and granddaughter by lifting Mia and her chair into my car,” she said.
“While my doctors are hopeful that I will be in remission within a few months, I am in significant pain each day. Even in remission, I will require a lifetime treatment of mild chemotherapy.”
To help her care for her family, Mullins would like to purchase a wheelchair accessible van with a chair lift, to help both Mia and Steve get to medical appointments, school, birthday parties, parks and all other events that a child should experience.
According to Mullins, a wheelchair accessible van can cost anywhere from $40,000 dollars to $100,000 dollars. She also has her sights set on an expensive Rifton Bike, which would help Mia develop leg strength, balance and coordination.
“We are also hopeful that the bike will allow Mia to engage with other children on a more social level,” Mullins said. But even the bike will need modifications so that Mia can use it.
Mullins had started a GoFundMe account called “Get Mia Movin’” to raise the necessary $30,000 for the child.
Mullins said she wants to be the type person to share an “inspirational quote” about perseverance.
“The truth, however, is that life has been incredibly difficult,” she said. “I am often very afraid.”
“I must admit,” said Privitera, “with the current curveball life has thrown her, I am feeling scared for my friend.”
Mullins is unfortunately not the only person in this predicament. It is estimated that nearly one in two Americans cannot afford their medical treatments, equipment or other necessities.
“Nearly half of all people in fair or poor health — 46.4 percent — are uninsured or have affordability problems despite having coverage,” said Drew Altman of the Kaiser Family Foundation when providing details about a 2018 study.
“That includes 13.5 percent who were uninsured and in fair or poor health — arguably the worst off in the entire system — and another 32.9 percent who have insurance but said they or a family member have had a problem affording care in the last year.”
This year, The Kaiser Family Foundation and The LA Times conducted a survey about those with employer-sponsored insurance.
“Since the passage of the Affordable Care Act (ACA) in 2010, much attention has been paid to the parts of the U.S. health insurance landscape that were most directly impacted by the law, including the individual insurance market and expanded Medicaid programs in some states,” said the survey.
The survey found that a “particularly vulnerable” group to health care affordability issues are “those with chronic conditions” — like Steve, Mia and Mullins.
“Just over half (54 percent) of those with employer-sponsored coverage say that someone covered by their plan has a chronic condition such as hypertension, asthma, a serious mental health condition or diabetes. About half of this group reports that their family has had problems paying medical bills or difficulty affording premiums or out-of-pocket costs, compared to about three in ten of those in families without a chronic condition.”
The combination of a chronic condition and a high deductible leads, the survey reported, to even more elevated rates of worries and problems.
“For example, three-quarters of those in the highest deductible plans who say someone on in their family has a chronic condition say that a family member in their household has skipped or delayed some type of medical care or prescription drugs for cost reasons in the past year.”
To donate to ‘Get Mia Movin’ GoFundMe, visit: https://www.gofundme.com/f/get-mia-movin039