Wilton Family Goes Extra Distance for Son’s Medical Care: ‘You Never, Ever Give Up.’
Imagine your newborn child needing medical intervention to sustain his life. Imagine then having to navigate a labyrinth of health insurance policies just to bring that child home with sufficient nursing care. It might quickly become apparent that overcoming new and daunting hurdles may be the new normal. For Wilton residents, Kerrie Scofield and Emily Humiston, in fact every day presents a new challenge, and unforeseen miracles, in caring for their three-year old son, Jack.
Born six weeks premature, Jack received a tracheostomy for breathing and a g-tube for feeding immediately after birth. He spent the first five months of his life in the Neonatal Intensive Care Units at Norwalk, Yale and Boston Children’s hospitals. It would be almost two years before he was diagnosed with Hypotonic (floppy) Cerebral Palsy. Hypotonia is low muscle tone condition that makes every day movements, like sitting up and walking, difficult and exhausting.
The ensuing struggle to secure hospital-mandated home care further intensified their heartache over Jack’s unexpected and extensive medical needs. As Kerrie describes it, they did not qualify for Medicaid and would have to cover the estimated $9,000-per-week cost. Any hope of receiving Medicaid assistance would force them to make a choice: get divorced so Jack was part of a single parent lower-income household; uproot their older daughter Dana and move to New York or Rhode Island where Medicare is available regardless of income; or keep Jack in the intensive care unit at Yale while they waited five to six years the for Katie Beckett waiver, which grants families Medicare regardless of income.
Kerrie, and Emily, who is a life-long Wilton resident and Wilton business owner, instead, made another Sophie’s choice-like decision together: Kerrie would quit her job. “We were bringing Jack home no matter what,” Kerrie says as a matter of fact.
Never, Ever Give Up
In the few years prior to his diagnosis, Jack underwent extensive testing, and yet doctors were initially stumped, offering no definitive answers.
“They told us every unimaginable and horrible thing,” Kerrie recalls, including that Jack might never eat. “Jack had no gag reflex. I’m Italian. I envisioned big feasts and here they were telling me that my baby may never eat.”
When Jack finally came home from the hospital, a motor therapist began working with him. “She said we would just keep working and see what happens,” Kerrie explains. Less than a year later he had the trach removed and has learned to eat pureed food by mouth.
This and various other milestones reaffirmed something critical for Kerrie and Emily. “You never give up. You never, ever give up,” Kerrie avows. “People will tell you, ‘You can’t do this,’ or, ‘Jack will never do that.’ They will even say, ‘You will never afford that.’ Well, we are doing it. Jack is doing it. We will never stop trying to move forward.”
The couple’s optimism is grounded in the tremendous strides Jack already has made in his young life. In the hopes of further increasing Jack’s independence, Kerrie and Emily decided to pursue stem cell therapy to complement the vigorous multitude of therapies he receives on a daily basis. Kerrie started researching stem cell therapy on the clinicaltrials.gov website at the suggestion of a Boston Children’s Hospital neurologist. But for a variety of reasons, Jack did not qualify for any of the studies or trials at various institutes and universities in the United States.
“They either needed older patients, or patients with a different type of CP. Nothing ever matched,” says Kerrie, who, disappointed but determined, continued to research alternative stem cell therapy options.
She soon discovered a Facebook group with story after story about children who experienced very positive results from stem cell therapies outside the U.S., in Mexico and Panama. Ironically, it was a warning from the neurologist at Boston Children’s that led Kerrie to even consider international options.
“The doctor said, ‘Whatever you do, do not leave the country.’ He planted the seed. Telling me not to go is what put the idea in my head.”
Kerrie continued her exhaustive research, learning that Bioss Stem Cell Institute, located in Monterrey, Mexico was a safe, reputable alternative with excellent care. Bioss opened in 2009 and focuses on regenerative medicine, offering Umbilical Cord Blood Banking, Platelet Rich Plasma and Stem Cell Therapy.
Dealing with challenges foreign to their previous life now will involve travel to a foreign land. After years of extraordinary measures to meet ordinary needs for Jack, Kerrie plans to travel with Jack to The Bioss Stem Cell Institute in Monterrey, Mexico–the furthest they have traveled to date. “From the beginning we said we have to try anything and everything. We are not going to let anyone or anything stop us,” Kerrie says.
In Mexico, Jack will undergo a week-long stem cell therapy during which he will receive stem cell stimulation shots the first three days, and on the fourth day, Jack’s own stem cells will be extracted, processed and reinserted by intravenous and intrathecal (spinal canal) administrations. The advantage of intrathecal administration is that the stem cells gain direct access to the spinal cord and travel into the brain. During the final days of therapy Jack will be observed to ensure that there is no infection or rejection of the stem cells.
While there is no scientific guarantee that the treatment will be effective, it is an undertaking that Kerri and Emily are more than eager to take on. “We are going into this with an open mind. Some patients have seen results right away, even the next day. Others have seen results within a few months. I’m trying not to get too excited. We know there is no guarantee,” says Kerrie.
Emily echoes these sentiments, “It’s so hard not knowing. This may be effective. It may not–but we have to try. We can’t wait three years for a study that may not ever become available to us.”
The Resolve–and Costs–are Ever Increasing
There are multiple hurdles in Jack’s path: Cortical Visual Impairment, auditory neuropathy and more recently seizures. He is non-mobile and non-verbal. The Scofield-Humiston family pursues multiple therapies, including physical, occupational, speech, oral motor (feeding), and Angelfish swim.
After his stem cell therapy, Jack will return to the Early Learning Center preschool at Miller-Driscoll, where he receives occupational and physical therapy three days a week. He will also continue to travel to Keep Moving Forward, an intensive physical therapy outpatient center in Long Island where his therapy is done with TheraSuit/Universal Exercise Unit (right), a body-positioning bracing suit that aligns the body as close to normal as possible in order to normalize muscle tone, and sensory and vestibular functions. Kerrie says the TheraSuit has been transformative therapy for Jack.
“The first day of his TheraSuit therapy he could not do anything on his own. But in that suit now he can stand in the corner by himself for two minutes, go from sit to stand, and walk with support. That is mind-blowing stuff for us to see!”
Of course the costs of all the efforts are prohibitive, but Kerrie and Emily couldn’t imagine not trying to do everything they can to help Jack. They acknowledge that the bad days come, just as they do for any parent, but their resolve and joy is as strong as ever.
“We were not expecting any of this. But even when we are tired and emotionally drained, we give ourselves the minute then begin again. You have to keep going. Jack is pure love–he inspires us every day.”
To learn more about Jack Scofield and how you can support him through a GoFund Me, please visit the “Love is Jack” Facebook page.