SHIPPENVILLE, Pa. (EYT) — After nearly five years of struggling with a muscle control disorder, a local boy and his family are now hoping for a brighter future.

Maddox Druckemiller, the son of Christian and June Druckemiller, of Shippenville, was born on Father’s Day, June 15, 2014 — a happy, seemingly healthy, seven-pound, 14-ounce baby boy.

According to June, who is an educator at Forest Area School District, the first concerns about Maddox were raised at his six-month check-up when his doctor realized he was not reaching all of his milestones and his head was measuring larger than normal.

June told exploreVenango.com, “Dr. Desai, our pediatrician, was very proactive and immediately referred us to a neurologist at Children’s in Pittsburgh.”

That was when their journey began.

Maddox has spasticity in his legs which is a muscle control disorder characterized by tight or stiff muscles and an inability to control those muscles. His lower body is very tight while his upper body is very weak. This condition makes simple tasks, such as sitting, laying down, walking, and moving in general difficult for him.

Over the last four years, Maddox has been seen by geneticists, neurologists, the spasticity clinic, the cerebral palsy clinic, an orthopedic surgeon, the children’s institute, and endocrinologists in Pittsburgh and Wexford. He currently takes baclofen, a muscle relaxer, three times each day every day. He has had three brain MRIs, during which he has had to be under general anesthesia, numerous evaluations, multiple rounds of genetic testing through blood work, and three rounds of Botox injections in his legs, which also required general anesthesia each time.

One difficulty is that all of the testings that he has undergone has come back normal, leaving his family and his doctors with no explanation as to why Maddox has spasticity in his legs. According to June, he does have many characteristics of cerebral palsy, but there was no injury at birth and his MRIs do not support that diagnosis.

“Many doctors refer to Maddox as a ‘mystery boy’ because he just doesn’t fit into one specific category or diagnosis,” explained June.

Maddox has been undergoing physical therapy since before he was one year old. He has also, over the last four years, had periods of occupational therapy and speech therapy, as well. Currently, Maddox receives physical therapy two times each month through the Intermediate Unit and goes to outpatient therapy once a week. He also receives speech and occupational therapy.

According to June, Maddox has come far over the last four years, physically, socially, and emotionally.

“Physically he went from not being able to sit up unassisted, to being totally reliant on an army crawl to get around, to learning to walk with braces and a walker, and to now, thanks to the Botox injections and much physical therapy, taking independent steps for short distances,” June said.

“Socially and emotionally, Maddox has always been a happy boy. Anyone who knows him knows him for his smile! However, Maddox has always been very shy and quiet. When he was younger he developed such a fear of doctors and people because of all that he was experiencing at his many appointments that his social development was hindered. However, he has come so far and is always showing what a tough little guy he is!”

While his progress has been heartening, the spasticity continues to be an issue for Maddox. That’s where selective dorsal rhizotomy (SDR), a neurosurgical procedure that selectively destroys problematic nerve roots in the spinal cord, comes in.

June said that SDR was first mentioned by Maddox’s orthopedic surgeon. However, many of Maddox’s doctors discouraged the surgery or said Maddox wouldn’t be a candidate.

Luckily, Christian, who is employed by Venango County Human Services, wouldn’t accept that.

“He spent hours researching SDR and found out about Dr. Park in St. Louis through a cerebral palsy Facebook group,” June said.

“He continued researching and contacted St. Louis. He gathered everything that Dr. Park needed for the initial evaluation. He set up appointments and did everything that needed to be done.”

Dr. Park receives packets from people all over the world reaching out to him for help. He reviews the packet of information, including videos of the child, scans, and doctors’ notes. Then the office contacts the patient and usually gives a yes or no to whether they are a candidate or not.

The Druckemillers sent their packet of information that Dr. Park needed and prayed for a “yes” from his office. When they received the call, they didn’t get quite the answer they were hoping for, but they didn’t get the answer they feared, either.

Dr. Park wanted to see Maddox, in person, to evaluate him. According to June, Maddox fits into a unique category of children because he doesn’t have a diagnosis or a recorded reason for his spasticity.

In November of 2018, Maddox and his family made the trip to St. Louis and met Dr. Park.

“It was a very surreal visit,” said June. “There is a clear reason why he is known as the best. His office is filled with pictures from people all over the world that he has changed their lives by completing the SDR surgery. He is the best in the world at SDR surgery, as he has completed over 4,000 surgeries.”

Dr. Park evaluated Maddox and confirmed that he has spasticity, but wanted Maddox to have one more MRI completed in March to confirm that there wasn’t something genetic occurring because some genetic disorders that cause spasticity can appear between ages four and five. He said if the MRI came back normal or unchanged from his previous MRI, they would schedule surgery.

On March 4, Maddox had his MRI, and it remained unchanged from his previous one. However, once again, Dr. Park did not give the family a cut and dry “yes.”

“Dr. Park was very diligent to check more doctors’ reports, scans, etc. to make sure the SDR was an appropriate option for Maddox,” June noted.

Finally, on March 14, the Druckemiller family received the answer they were waiting for: Dr. Park gave his approval for Maddox to have the surgery and it will be scheduled sometime this summer.

SDR begins with a one to two-inch incision along the center of the lower back just above the waist. The spinous processes and a portion of the lamina are removed to expose the spinal cord and spinal nerves. Ultrasound and an x-ray locate the tip of the spinal cord, where there is a natural separation between sensory and motor nerves. A rubber pad is placed to separate the motor from the sensory nerves. The sensory nerve roots that will be tested and cut are placed on top of the pad and the motor nerves beneath the pad, away from the operative field. After the sensory nerves are exposed, each sensory nerve root is divided into three to five rootlets, and each rootlet is tested with EMG, which records electrical patterns in muscles. Rootlets are ranked from one (mild) to four (severe) for spasticity. The severely abnormal rootlets are cut. This technique is repeated for rootlets between spinal nerves L1 and S1/S2.

“It is a very complex surgery and, as parents, a very scary surgery for our little man to have,” June said.

“However, it is a life-changing surgery that will result in Maddox being able to do things that may have never been possible otherwise. Also, spasticity can be very damaging to a child’s body if not removed. It can result in major hip and back issues later in life that could result in multiple surgeries and severe pain.”

The surgery will require Maddox to be in the hospital for five nights. He will be discharged on the sixth day.

“He will, unfortunately, be in a considerable amount of pain the first few days after surgery so that will determine when we begin our journey home to Shippenville. It will depend on how well he can tolerate the car ride.”

Following the surgery itself, Maddox will begin physical therapy while still in the hospital and will then continue intense therapy, five days per week, once the family returns home.

“He will basically have to learn to walk again as the tightness that he is used to in his legs will have been removed,” June noted.

While Maddox has walked a difficult road, and still has difficulties ahead as he heals from his surgery, the Druckemiller family is grateful for the opportunity the surgery will offer him.

“Dr. Park is opening doors for Maddox that may have never been opened. SDR changes lives!”

June noted that they decided to share Maddox’s story in the hope of spreading word about SDR and how much of a difference it can make to children living with spasticity.

“Many people have never heard of SDR. Many parents of children with cerebral palsy have never heard about SDR, and it is designed for those children with spasticity. If it wasn’t for my husband and his research, we would be uninformed parents. We would be continuing our yearly doctor’s visits, having Botox injections every six months to a year, and worrying about what the future looks like for our son. Will he develop a curvature of his spine? Will his hip dysplasia worsen? What surgeries will he need in the future? Is he going to be in severe pain as he grows? What will this spasticity do to his little body?”

“We, however, were given another path for our son. So watch out world, the little boy from a small town is going to receive a life-changing surgery from the world’s best doctor and there’ll be no stopping him now!”