By Angie Bado, TSB Publisher
Imagine having a family member with a medical condition that will never improve. Imagine having to work full time and take care of that individual round the clock. Imagine the huge medical bills that keep coming nonstop.
This is the life of McKinney family Jessica and Stoney McKeever as they care for their son Mason, who was born with spina bifida. Spina bifida is a birth defect in which the backbone and spinal canal do not close before birth.
Mason was also born with hydrocephalus, a buildup of fluid inside the skull that leads to brain swelling. Hydrocephalus is present in approximately 90% of babies born with spina bifida. The cerebrospinal fluid, which helps cushion the brain, normally moves through the brain and the spinal cord, and is soaked into the bloodstream. In Mason’s case, the defect in his spinal cord prevents this from occurring requiring a shunt to be placed in his head in order to drain the cerebrospinal fluid.
Jessica said that Mason’s opening in his spinal cord is located at the base of his spine, and although surgery to cover the opening with skin helps to reduce the incidence of infection, there is no available treatment to actually close the spinal cord.
Mason, who will turn 4 in July, requires constant care. His mom explained that spina bifida damages the nerves that run through the spinal cord. In Mason’s case, this means that the nerves in the lower portion of his body are damaged, causing neurogenic bladder and bowel. The nerve messages that go back and forth between the brain and the muscles that control bladder and bowel emptying are not functioning, and for Mason, this translates into a constantly spasming bladder, pushing out urine at all times. Medication can control the spasms, however, Mason is unable to receive the messages from the nerves that work the muscles controlling his bladder and bowel functions.
“We have to (catheterize) him every four hours,” Jessica said. “If we don’t, it’s really scary because his abdomen looks like it has a fist inside it, as the urine causes swelling, which can back up in the kidneys and cause all kinds of problems.”
Mason can eat normally, but he also takes medicine to soften the stool and then requires an enema every 4 to 5 hours following a meal.
The family gets some much-needed help at the early Head Start school where Mason receives physical therapy. Wheelchair bound because his lower extremities are weak, Mason is unable to walk, but he can crawl his mother said. He is able to pull himself up to some extent, but as Mason’s body grows, his parents will continue to have to lift him in and out of the wheelchair and his bed.
“It’s a lot of work, especially when I’m trying to work,” Jessica elaborated. “We anticipate a normal lifespan, but he will require this kind of care for his entire life.”
The McKeevers are still waiting to have waiting for nursing care to assist with the catheter every 3 hours but they are enrolled in the Medically Dependent Children Program, which provides services to support families caring for children and young adults who are medically dependent and discourages placing children in nursing facilities.
Caring for any child is expensive, but a child who has continuous medical needs is financially draining on a family. How much has the family spent on medical bills so far? “I don’t have a clue, but a lot,” Jessica said with emphasis on ‘a lot.’ The medicine, the supplies and everything have added up. We just had to remodel the inside of our home and make it ADA compliant so Mason can get around more easily.”
Enter Intersect Church. The pastor of Intersect, Brian Bellflower, asked his doctor’s office if they knew of a family in the community who would benefit from some help from his church. The office referred him to the McKeevers and plans took shape to hold a Zumba party on Saturday, June 2, to raise funds for the family.
Bellflower said emphatically, “Our church believes that the fundamental part of following Jesus is showing compassion to people. When I learned of this need I immediately knew that we needed to help this family to relieve some the financial challenges associated with raising their child.” said Bellflower. “We want to do what we can to walk through this with this family. We want to be contributors to our community, not takers. “
Jessica said she doesn’t have any expectations as far as financial support from the community is concerned. “I’m just grateful for anything (any help)”, she commented.
She relayed to TSB that although they want more children, that will not be part of the plan because in families who have a child with spina bifida, future children have a higher risk of being born with the defect.
The Zumba party will be held at on Saturday, June 2 at Kids “R” Kids Preschool, 9070 Westridge Dr. in McKinney from 5 to 6:30 p.m. (Zumbatomic for kids will be from 6 to 6:30) Intersect church is asking for donations of $10 to attend. Registration is helpful, although not required.
Photo: Mason McKeever