- M
Alek was born in September 2015. He had to be delivered abruptly, through an emergency c-section due to Mama’s very high blood pressure. Although the complications were very severe, Alek was doing fantastic. He was breathing normally and there were no signs of trouble.
Due to his low birth weight he was put under observation with the Neurology department. During his first visit the doctor noticed increased muscle tension and referred Alek to rehabilitation.
Alek’s parents truly hoped that this would go away within a few months. Unfortunately life prepared a different script for them.
At only 8 months old Alek had his first epilepsy attack. They ended up at the hospital and after thorough and detailed exams they learned that Alek’s case is perinatal hypoxia and epilepsy.
Alek’s hypoxia is manifested by motor disability. Their neurologist waited with the final diagnosis for quite some time, not long ago they heard Diplegic Cerebral Palsy.
It means that Alek’s hands are generally fine, but that he cannot walk.
At first glance everything is great, and Alek’s parents very often notice the astonishment on people’s faces when they find out that Alek is handicapped.
He is a very happy and smiley 3 year old toddler who is trapped in his own body.
When he sits in a stroller he appears perfectly fine. It’s only when he’s taken out that you can see the diffrence.
He will not run up to a swing-we have to carry him to it.
He will not sit in the sandbox by himself-he needs assistance.
He can’t play ball in the park even though we see the fire in his eyes of how badly he would love to kick and run with his peers.
For now Alek is limited to slithering (army crawl) on the floor and recently he has learned how to sit on his own, all due to his hard work everyday at rehabilitation. He also attends weekly speech therapy classes, hipotherapy and pool rehabilitation. A few times a year he goes to intensive PT camps.
Despite the constant intensive and very costly rehabilitation , improvment is very hard to achieve.
Muscle spasticity is all to blame. It causes Alek’s leg muscles to be constantly tense. Imagine flexing your muscles 24/7! He is in pain and contracture, and in the future it will deform his joins, and cause subluxing of the hips.
Recently Alek’s parents learned about SDR ( Selective Dorsal Rhizotomy ) performed by Dr. T.S Park at the St. Louis Children’s Hospital. By God’s grace it turns out that Alek is a perfect candidate for this surgery and has a big chance of being independent one day.
https://www.stlouischildrens.org/conditions-treatments/center-for-cerebral-palsy-spasticity/about-selective-dorsal-rhizotomy
This amaizing surgery is his only chance to eliminate spasticity and gain motor skills.
This is a very precise procedure performed on the spinal cord.
Nerves are very carefully checked and the ones that are responsible for Alek’s spasticity will be cut.
Dr T.S. Park is the best, most expirienced neurosurgeon at SDR in the world. He has done over 4000 surgeries and he is the only one we can trust.
After the procedure there will be months of extremly intensive rehabilitation. Alek is used to hard work. His daily schedule is filled with activities to help him get stronger and more independent.
After SDR surgery he will work on his muscle strength, balance and gross motor function-but hopefully with the absence of muscle spasticity.
Alek’s surgery is not life-saving but it will give him a chance to enjoy his childhood, be independent and to live life without pain.
Although Alek is very smiley and courious about the world he can’t explore it all by himself. He’s little now so his parents are his legs, and find themselves in strange poses and situations so he can experience at least some of the things that his peers do. But Alek is growing and his parents will not be here forever... That‘s why SDR surgery is so important.
The costs associated with the operation and subsequent rehabilitation exeed family financial possibilities.
That’s why we ask for your kind support. Every penny counts and will be extremly humbling and appreciated.
We hope and pray that with your help we will be able to look at Alek’s future with more ease and less worry.
Thank you with all of our hearts and God Bless You.
Due to his low birth weight he was put under observation with the Neurology department. During his first visit the doctor noticed increased muscle tension and referred Alek to rehabilitation.
Alek’s parents truly hoped that this would go away within a few months. Unfortunately life prepared a different script for them.
At only 8 months old Alek had his first epilepsy attack. They ended up at the hospital and after thorough and detailed exams they learned that Alek’s case is perinatal hypoxia and epilepsy.
Alek’s hypoxia is manifested by motor disability. Their neurologist waited with the final diagnosis for quite some time, not long ago they heard Diplegic Cerebral Palsy.
It means that Alek’s hands are generally fine, but that he cannot walk.
At first glance everything is great, and Alek’s parents very often notice the astonishment on people’s faces when they find out that Alek is handicapped.
He is a very happy and smiley 3 year old toddler who is trapped in his own body.
When he sits in a stroller he appears perfectly fine. It’s only when he’s taken out that you can see the diffrence.
He will not run up to a swing-we have to carry him to it.
He will not sit in the sandbox by himself-he needs assistance.
He can’t play ball in the park even though we see the fire in his eyes of how badly he would love to kick and run with his peers.
For now Alek is limited to slithering (army crawl) on the floor and recently he has learned how to sit on his own, all due to his hard work everyday at rehabilitation. He also attends weekly speech therapy classes, hipotherapy and pool rehabilitation. A few times a year he goes to intensive PT camps.
Despite the constant intensive and very costly rehabilitation , improvment is very hard to achieve.
Muscle spasticity is all to blame. It causes Alek’s leg muscles to be constantly tense. Imagine flexing your muscles 24/7! He is in pain and contracture, and in the future it will deform his joins, and cause subluxing of the hips.
Recently Alek’s parents learned about SDR ( Selective Dorsal Rhizotomy ) performed by Dr. T.S Park at the St. Louis Children’s Hospital. By God’s grace it turns out that Alek is a perfect candidate for this surgery and has a big chance of being independent one day.
https://www.stlouischildrens.org/conditions-treatments/center-for-cerebral-palsy-spasticity/about-selective-dorsal-rhizotomy
This amaizing surgery is his only chance to eliminate spasticity and gain motor skills.
This is a very precise procedure performed on the spinal cord.
Nerves are very carefully checked and the ones that are responsible for Alek’s spasticity will be cut.
Dr T.S. Park is the best, most expirienced neurosurgeon at SDR in the world. He has done over 4000 surgeries and he is the only one we can trust.
After the procedure there will be months of extremly intensive rehabilitation. Alek is used to hard work. His daily schedule is filled with activities to help him get stronger and more independent.
After SDR surgery he will work on his muscle strength, balance and gross motor function-but hopefully with the absence of muscle spasticity.
Alek’s surgery is not life-saving but it will give him a chance to enjoy his childhood, be independent and to live life without pain.
Although Alek is very smiley and courious about the world he can’t explore it all by himself. He’s little now so his parents are his legs, and find themselves in strange poses and situations so he can experience at least some of the things that his peers do. But Alek is growing and his parents will not be here forever... That‘s why SDR surgery is so important.
The costs associated with the operation and subsequent rehabilitation exeed family financial possibilities.
That’s why we ask for your kind support. Every penny counts and will be extremly humbling and appreciated.
We hope and pray that with your help we will be able to look at Alek’s future with more ease and less worry.
Thank you with all of our hearts and God Bless You.