Eli's Journey
Donation protected
Eli, was diagnosed with a genetic disorder, hereditary spastic paraplegia-type 4, at 16 months of age. This genetic disorder is familial in nature and primarily affects the lower extremities. The effects on the lower extremities includes increased muscle tone (spasticity) and affects his ability to balance and walk. Eli has been in physical therapy since he was 14 months old and ambulates with a kaye-walker. Eli's condition is very rare and we travel 4-8 hours to seek treatment from specialists. Since he was 27 months old, Eli has been receiving Botox and Phenol injections in his legs to help reduce the muscle tone. These injections are done under anesthesia every 3-6 months. As I noticed his body respond to the Phenol injections so well, I inquired about other, more permanent, solutions to his spasticity.
I learned about a world-renowned neurosurgeon in St. Louis, Dr. Park, who was changing lives for people with spasticity with a surgical procedure known as SDR, selective dorsal rhizotomy. The SDR procedure involves opening up the spine, locating the nerve(s) that cause the increased muscle tone and severing the nerve at the root.
As I talked with Eli's specialists about this doctor and procedure, I became aware of a neurosurgeon in Houston, Dr. Shah, who was trained by Dr. Park and comes very highly recommended. We met Dr. Shah in November of 2020 and were accepted as a candidate for SDR surgery. We were given a surgery date of March 22, 2021, hope for an improved quality of life for our son, and educated about the challenges we would face post operatively.
Some children, like Eli, rely on their increased muscle tone to stand, walk and sit because they have never been able to exercise the muscles that allow you and I to walk regularly. We were told that immediately after surgery, our son might resemble a "floppy doll", that he might have to relearn how to sit and stand and walk all over again and that he will be wheelchair bound immediately post operatively. Eli will spend one week in the medical inpatient unit of the hospital and then be transferred to intensive inpatient rehabilitation for six weeks. I am told that he will still not be back to his baseline after those six weeks of rehab and will need to continue intensive outpatient therapy (3+ times per week) upon returning home.
Eli is a very energetic, fun, funny, independent, tenacious and smart little boy. He is excited about this procedure even though he knows there will be lots of hard work afterward. He says, "my legs will do what I want them to do!" Eli's condition has slowed him down but does not stop him from finding joy in life. Recently, at school, they were learning about Martin Luther King and his dream. Each child was then asked about one of their dreams. The teachers told me that some kids had dreams about unicorns and other silly, child-appropriate stuff. When it was Eli's turn, they said that he told them that he had a dream that he walked into the school without his walker and that he was standing up so strong all by himself. While no one can say for sure if this will be the outcome of the surgery, this surgery is key to making that dream a reality. I believe Eli is going to rise to the challenge after this surgery and I know that God is going to be with us on this journey to strengthen us physically, spiritually and emotionally as we face some of the most difficult times of our lives.
I learned about a world-renowned neurosurgeon in St. Louis, Dr. Park, who was changing lives for people with spasticity with a surgical procedure known as SDR, selective dorsal rhizotomy. The SDR procedure involves opening up the spine, locating the nerve(s) that cause the increased muscle tone and severing the nerve at the root.
As I talked with Eli's specialists about this doctor and procedure, I became aware of a neurosurgeon in Houston, Dr. Shah, who was trained by Dr. Park and comes very highly recommended. We met Dr. Shah in November of 2020 and were accepted as a candidate for SDR surgery. We were given a surgery date of March 22, 2021, hope for an improved quality of life for our son, and educated about the challenges we would face post operatively.
Some children, like Eli, rely on their increased muscle tone to stand, walk and sit because they have never been able to exercise the muscles that allow you and I to walk regularly. We were told that immediately after surgery, our son might resemble a "floppy doll", that he might have to relearn how to sit and stand and walk all over again and that he will be wheelchair bound immediately post operatively. Eli will spend one week in the medical inpatient unit of the hospital and then be transferred to intensive inpatient rehabilitation for six weeks. I am told that he will still not be back to his baseline after those six weeks of rehab and will need to continue intensive outpatient therapy (3+ times per week) upon returning home.
Eli is a very energetic, fun, funny, independent, tenacious and smart little boy. He is excited about this procedure even though he knows there will be lots of hard work afterward. He says, "my legs will do what I want them to do!" Eli's condition has slowed him down but does not stop him from finding joy in life. Recently, at school, they were learning about Martin Luther King and his dream. Each child was then asked about one of their dreams. The teachers told me that some kids had dreams about unicorns and other silly, child-appropriate stuff. When it was Eli's turn, they said that he told them that he had a dream that he walked into the school without his walker and that he was standing up so strong all by himself. While no one can say for sure if this will be the outcome of the surgery, this surgery is key to making that dream a reality. I believe Eli is going to rise to the challenge after this surgery and I know that God is going to be with us on this journey to strengthen us physically, spiritually and emotionally as we face some of the most difficult times of our lives.
Organizer and beneficiary
Brandon Patton
Organizer
Ingleside, TX
Jennifer Phillips
Beneficiary