Simon's Medical Expenses
Donation protected
The problem
As a result of a malignant brain tumor, its treatment, and later a series of improper diagnoses, Simon has developed strong muscle contractures which have led to scoliosis and other physical problems. His pelvis is lowered on the side where his leg is shorter (he is now wearing a special pad in his shoe), his backbone is curved, and his chest is deformed. He also has problems with balance (for example, he has difficulties balancing when riding a bike).
Because it was initially recommended (incorrectly as we now know) that he do little activity for months/years because of the surgery, he initially spent much time in bed, eating very little, and participated in no physical exercise except for basic life activities. Consequently, many of his muscles atrophied and were not being stretched even as the bones in his body were growing normally.
In addition, his hands do not work properly, and he has no strength in his fingers. Fine motor coordination is limited, making difficult activities like tying shoe laces.
Treatments that have already been done
Last year he started rehabilitation.
Because of the muscle weakness and stiffness, it was initially recommended that Simon go to a swimming pool for physical therapy with a coach. Unfortunately, he had developed a water phobia post-surgery. It was a real struggle to overcome it, but he finally did!
He has also had ambulatory rehabilitation which required a 4-week stay in a rehabilitation center in April. He received a variety of physical therapy treatments and also had sessions with a psychologist.
In addition to all of these physical issues, he began having severe migraine headaches that lasted for days. During these episodes, he experienced frequent vomiting and what is called “photophobia.” Each time he had to go to a hospital for one week.
Altogether during this school year, he has spent about 3 months in various hospitals receiving treatment and rehabilitation. So he has not had much time for a “normal” life. Needless to say, his life is very different from that of his friends.
Results of the current rehabilitation
· Simon was able to overcome the water phobia.
· There is an increase in his fitness level, range of motion, and body movements.
· There is increased flexibility and muscle length.
· He is able to do the basic exercises.
· His spine has significantly straightened.
What is coming next?
Simon has to exercise 30-40 minutes every day, supervised by his mom, doing the exercises he learned in the hospital.
He needs to swim on a regular basis and also participate in some outdoor sports activity.
He will continue specialized rehabilitation.
Twice per year he will have physical therapy consultations/evaluations.
· He will need orthopedic consultations.
· He will need oncological consultations and CT/MRI scans.
· He will need neurological consultations.
· He will need ophthalmic consultations because of surgical damage done to some nerves that affected his eyes.
Expected results
The prognosis is very good. The scoliosis is decreasing and, in his case, is curable. He will just need to continue specialized rehabilitation over the next few years while his body is still growing.
Additionally, doctors are expecting that his muscle contractures will be gradually removed and the functioning and strength of his muscles will increase, enabling the backbone to stabilize. The muscles that are presently too short will be lengthened.
His overall fitness will increase, and his backbone shape will be corrected. The quality of his life will significantly improve, making it possible for him to run, ride a bicycle, and play sports like basketball and soccer.
As a result of a malignant brain tumor, its treatment, and later a series of improper diagnoses, Simon has developed strong muscle contractures which have led to scoliosis and other physical problems. His pelvis is lowered on the side where his leg is shorter (he is now wearing a special pad in his shoe), his backbone is curved, and his chest is deformed. He also has problems with balance (for example, he has difficulties balancing when riding a bike).
Because it was initially recommended (incorrectly as we now know) that he do little activity for months/years because of the surgery, he initially spent much time in bed, eating very little, and participated in no physical exercise except for basic life activities. Consequently, many of his muscles atrophied and were not being stretched even as the bones in his body were growing normally.
In addition, his hands do not work properly, and he has no strength in his fingers. Fine motor coordination is limited, making difficult activities like tying shoe laces.
Treatments that have already been done
Last year he started rehabilitation.
Because of the muscle weakness and stiffness, it was initially recommended that Simon go to a swimming pool for physical therapy with a coach. Unfortunately, he had developed a water phobia post-surgery. It was a real struggle to overcome it, but he finally did!
He has also had ambulatory rehabilitation which required a 4-week stay in a rehabilitation center in April. He received a variety of physical therapy treatments and also had sessions with a psychologist.
In addition to all of these physical issues, he began having severe migraine headaches that lasted for days. During these episodes, he experienced frequent vomiting and what is called “photophobia.” Each time he had to go to a hospital for one week.
Altogether during this school year, he has spent about 3 months in various hospitals receiving treatment and rehabilitation. So he has not had much time for a “normal” life. Needless to say, his life is very different from that of his friends.
Results of the current rehabilitation
· Simon was able to overcome the water phobia.
· There is an increase in his fitness level, range of motion, and body movements.
· There is increased flexibility and muscle length.
· He is able to do the basic exercises.
· His spine has significantly straightened.
What is coming next?
Simon has to exercise 30-40 minutes every day, supervised by his mom, doing the exercises he learned in the hospital.
He needs to swim on a regular basis and also participate in some outdoor sports activity.
He will continue specialized rehabilitation.
Twice per year he will have physical therapy consultations/evaluations.
· He will need orthopedic consultations.
· He will need oncological consultations and CT/MRI scans.
· He will need neurological consultations.
· He will need ophthalmic consultations because of surgical damage done to some nerves that affected his eyes.
Expected results
The prognosis is very good. The scoliosis is decreasing and, in his case, is curable. He will just need to continue specialized rehabilitation over the next few years while his body is still growing.
Additionally, doctors are expecting that his muscle contractures will be gradually removed and the functioning and strength of his muscles will increase, enabling the backbone to stabilize. The muscles that are presently too short will be lengthened.
His overall fitness will increase, and his backbone shape will be corrected. The quality of his life will significantly improve, making it possible for him to run, ride a bicycle, and play sports like basketball and soccer.
Organizer
Abefroeman Sausage-King
Organizer
Greenville, NC
