A Better Life for Marli
Donation protected
Who would think that at the age of 4 you would hear doctors talking about options to keep your hips from being pulled out of their sockets; listening to your parents trying to find a procedure or a method to prevent you from getting all twisted and deformed because my brain is sending too many signals back and forth, which causes my muscles to get really tight and contract. Hello! My name is Marli, and I am a warrior, at least that is what my Dad tells me; but this has been a struggle for me since I was 1 year old.
I was born October 15, 2014. Since I was 2 weeks old I have had to fight and battle through many obstacles in my life. Mommy and Daddy always tell me that battles make us strong, and when we fall we have to get back up. I have had many battles since I’ve been born, and Mommy, Daddy, and my little brother Mozes are always there to help me fight. Some battles have been harder than others for sure, like when I was unable to keep any of my food down when I was a little baby. We won that battle and I have a pretty cool scar to show for it, I got my g-tube right before my first birthday. While it was very uncomfortable at first, I was finally able to eat good and keep most of my food down. Mommy seemed really worried before I fell asleep in the hospital, Daddy did too, but before I went to sleep for a little they told me that this would help me get the right amount of nutrition that I needed for me to grow big and strong. They also told me that I would be safer because the danger of aspirating food into my lungs would no longer be present. Mommy told me that can cause pneumonia; I’m not sure what that is, but it sounds pretty bad.
Right now I am 4 and I am not able to crawl, sit independently, walk, talk, or feed myself. I usually have to wait for every single thing to be done for me; sometimes this makes me very sad. All I desire is to be like the rest of the kids and be able to move about and play and enjoy the simple pleasures of life with my little brother Mozes and my cousins.
For the past 4 years, Mommy and Daddy have tried numerous types of therapies and treatments to help improve my life and support my development including: cranial sacral therapy, ABM therapy, Therasuit therapy, neuroplasticity treatment, conductive education summer camp, chiropractic adjustments, physical therapy, occupational therapy, and speech therapy.
Over the last year, my Mommy and Daddy learned of SPML (Selective Percutaneous Muscle Lengthening) and Alcohol Nerve Blocks. These are medical procedures that will not only provide relief to my spastic muscles but it will give me the best chances at any type of movement. It will also help prevent future hip displacements and surgeries. Unfortunately, my insurance doesn’t cover this procedure which is over $21,000. We will have to travel all the way to Texas to see one of the only two doctors in the United States who do this procedure. It will be my first time ever on a plane.
We are grateful and thankful for any support and any contribution. Without your generosity these procedures would not be possible.
Marli Scott
We know that this procedure can be very confusing, so we have provided more information regarding SPML and Alcohol Nerve Blocks below. If you have any questions, feel free to send us a message on here, and we will reply.
What is SPML?
SPML (Selective Percutaneous Myofascial Lengthening) refers to an outpatient surgery under a general anesthetic for the treatment of the spasticity and tight tendons that are found in children with cerebral palsy. The word “Percutaneous” in the name SPML means using very small skin incisions 2-3 mm in length, so small that stitches are not needed. The SPML method was developed by Roy Nuzzo M.D. of Summit, NJ.
What is exactly done with the SPML procedure?
The SPML procedure involves releasing tight bands of tendon. This is done where muscle and tendon overlap. These areas of overlap are areas where a tendon starts to blend into a muscle. The tendon spreads out and is thinner at this location and is called Myofascia. When the myofascia is cut, the muscle under it can easily stretch and lengthen.
Can the SPML procedure decrease spasticity?
Yes. Walking on a contracted joint puts a strong pull on the muscle- tendon unit with each step. This stimulates spasticity. Lengthening the muscle- tendon unit decreases the spasticity in that area. The beauty of the SPML procedure is that since it is practical with the minimal incisions to lengthen muscle- tendon units in many locations in the lower extremities, spasticity can be decreased in many locations.
What is an alcohol nerve block?
The alcohol nerve block is a common procedure that is done at the same time as the SPML procedure in children who have overactivity of the obturator nerves, which are nerves in the groin that contribute to stiffness of the hips or scissoring gait, in which the legs cross in front of each other in walking. The alcohol block is also used to decrease spasticity in the legs when it is associated with groin tightness. The alcohol block takes the nerve from overactive spasticity to a more normal state. It does this by dissolving the fatty coating, called the myelin sheath which is wrapped around the nerve. The nerve itself remains intact. The myelin sheath can grow back in about 3 years.
I was born October 15, 2014. Since I was 2 weeks old I have had to fight and battle through many obstacles in my life. Mommy and Daddy always tell me that battles make us strong, and when we fall we have to get back up. I have had many battles since I’ve been born, and Mommy, Daddy, and my little brother Mozes are always there to help me fight. Some battles have been harder than others for sure, like when I was unable to keep any of my food down when I was a little baby. We won that battle and I have a pretty cool scar to show for it, I got my g-tube right before my first birthday. While it was very uncomfortable at first, I was finally able to eat good and keep most of my food down. Mommy seemed really worried before I fell asleep in the hospital, Daddy did too, but before I went to sleep for a little they told me that this would help me get the right amount of nutrition that I needed for me to grow big and strong. They also told me that I would be safer because the danger of aspirating food into my lungs would no longer be present. Mommy told me that can cause pneumonia; I’m not sure what that is, but it sounds pretty bad.
Right now I am 4 and I am not able to crawl, sit independently, walk, talk, or feed myself. I usually have to wait for every single thing to be done for me; sometimes this makes me very sad. All I desire is to be like the rest of the kids and be able to move about and play and enjoy the simple pleasures of life with my little brother Mozes and my cousins.
For the past 4 years, Mommy and Daddy have tried numerous types of therapies and treatments to help improve my life and support my development including: cranial sacral therapy, ABM therapy, Therasuit therapy, neuroplasticity treatment, conductive education summer camp, chiropractic adjustments, physical therapy, occupational therapy, and speech therapy.
Over the last year, my Mommy and Daddy learned of SPML (Selective Percutaneous Muscle Lengthening) and Alcohol Nerve Blocks. These are medical procedures that will not only provide relief to my spastic muscles but it will give me the best chances at any type of movement. It will also help prevent future hip displacements and surgeries. Unfortunately, my insurance doesn’t cover this procedure which is over $21,000. We will have to travel all the way to Texas to see one of the only two doctors in the United States who do this procedure. It will be my first time ever on a plane.
We are grateful and thankful for any support and any contribution. Without your generosity these procedures would not be possible.
Marli Scott
We know that this procedure can be very confusing, so we have provided more information regarding SPML and Alcohol Nerve Blocks below. If you have any questions, feel free to send us a message on here, and we will reply.
What is SPML?
SPML (Selective Percutaneous Myofascial Lengthening) refers to an outpatient surgery under a general anesthetic for the treatment of the spasticity and tight tendons that are found in children with cerebral palsy. The word “Percutaneous” in the name SPML means using very small skin incisions 2-3 mm in length, so small that stitches are not needed. The SPML method was developed by Roy Nuzzo M.D. of Summit, NJ.
What is exactly done with the SPML procedure?
The SPML procedure involves releasing tight bands of tendon. This is done where muscle and tendon overlap. These areas of overlap are areas where a tendon starts to blend into a muscle. The tendon spreads out and is thinner at this location and is called Myofascia. When the myofascia is cut, the muscle under it can easily stretch and lengthen.
Can the SPML procedure decrease spasticity?
Yes. Walking on a contracted joint puts a strong pull on the muscle- tendon unit with each step. This stimulates spasticity. Lengthening the muscle- tendon unit decreases the spasticity in that area. The beauty of the SPML procedure is that since it is practical with the minimal incisions to lengthen muscle- tendon units in many locations in the lower extremities, spasticity can be decreased in many locations.
What is an alcohol nerve block?
The alcohol nerve block is a common procedure that is done at the same time as the SPML procedure in children who have overactivity of the obturator nerves, which are nerves in the groin that contribute to stiffness of the hips or scissoring gait, in which the legs cross in front of each other in walking. The alcohol block is also used to decrease spasticity in the legs when it is associated with groin tightness. The alcohol block takes the nerve from overactive spasticity to a more normal state. It does this by dissolving the fatty coating, called the myelin sheath which is wrapped around the nerve. The nerve itself remains intact. The myelin sheath can grow back in about 3 years.
Organizer
Raquel Scott
Organizer
Lutz, FL