Jackson's Journey
Donation protected
Due to a lack of oxygen at birth, Jackson developed Cerebral Palsy. He was diagnosed at 13 months old, having missed developmental motor milestones. He received in-home therapy until he was three, and then had physical therapy and occupational therapy through the local school system. We also had a private physical therapist, Bonnie, for many years, who we will always be extremely thankful for!
It has always been a struggle just to keep his muscles stretched because of the spasticity associated with CP. The injury to the brain causes a miscommunication of the neurons which, in Jackson's case, affects his legs, causing a constant tightness (spasticity) in his hips, legs, knees, ankles, feet. When asked what this feels like for Jackson, the answer most often used is that it feels like constant painful leg cramping. It has become much worse in the last few years, as Jackson is going through the usual 16 yr. old growth spurts! When bones grow and the muscles can't keep up in length, distortion and pain results. In fact, he had surgery last year on his right foot because it was being pulled out of position too severely and he may need it on the other foot.
We were recently made aware of an exciting surgery which has helped many people with Cerebral Palsy REMOVE THEIR SPASTICITY FOREVER. It is called Selective Dorsal Rhizotomy or SDR. There is a link below which explains the procedure if you would like to learn about it. Jackson has qualified for the surgery, which we are extremely excited ( and just a bit nervous!) about. Our date has been set for August, so we are fundraising now, as we just received confirmation. It is with Dr. Park at St. Louis Children's Hospital, in St Louis, MO. Dr. Park has performed over 3000 of these surgeries over the last 30 years. It involves going into the spine, testing to see which nerves are responsible for the spasticity, and severing them. It will be quite the life-changing operation!
After the surgery and physical therapy, it is expected that Jackson's endurance, balance, and posture will allow him to walk in a way that other people normally take for granted. Challenges such as uneven terrain, stairs and simple inclines will be a problem no more. The operation will also prevent any further muscular atrophy.
The surgery is 95% covered. However, Jackson will need Intensive Physical Therapy after the SDR operation, as all his muscles that have never been used are now ready and waiting after the spasticity has been removed. This will involve 4-5 x/wk PT for 6 mo. and then 3x/wk for another 6 mo. and 2x/wk for the next 6 mo. I get tired just writing it! Very little of this PT will be covered, so most will be out-of-pocket. Also, we need to cover travel expenses, and all equipment needed. The physical therapy is really where the expense lies, so any donation that you can make, even $5, will assist towards helping Jackson.
If you can't donate, please could you share Jackson's Journey on your social media pages. It would be a great help.
Thank you for your support and consideration
SDR Saint Louis Children's Hospital Informational Video
It has always been a struggle just to keep his muscles stretched because of the spasticity associated with CP. The injury to the brain causes a miscommunication of the neurons which, in Jackson's case, affects his legs, causing a constant tightness (spasticity) in his hips, legs, knees, ankles, feet. When asked what this feels like for Jackson, the answer most often used is that it feels like constant painful leg cramping. It has become much worse in the last few years, as Jackson is going through the usual 16 yr. old growth spurts! When bones grow and the muscles can't keep up in length, distortion and pain results. In fact, he had surgery last year on his right foot because it was being pulled out of position too severely and he may need it on the other foot.
We were recently made aware of an exciting surgery which has helped many people with Cerebral Palsy REMOVE THEIR SPASTICITY FOREVER. It is called Selective Dorsal Rhizotomy or SDR. There is a link below which explains the procedure if you would like to learn about it. Jackson has qualified for the surgery, which we are extremely excited ( and just a bit nervous!) about. Our date has been set for August, so we are fundraising now, as we just received confirmation. It is with Dr. Park at St. Louis Children's Hospital, in St Louis, MO. Dr. Park has performed over 3000 of these surgeries over the last 30 years. It involves going into the spine, testing to see which nerves are responsible for the spasticity, and severing them. It will be quite the life-changing operation!
After the surgery and physical therapy, it is expected that Jackson's endurance, balance, and posture will allow him to walk in a way that other people normally take for granted. Challenges such as uneven terrain, stairs and simple inclines will be a problem no more. The operation will also prevent any further muscular atrophy.
The surgery is 95% covered. However, Jackson will need Intensive Physical Therapy after the SDR operation, as all his muscles that have never been used are now ready and waiting after the spasticity has been removed. This will involve 4-5 x/wk PT for 6 mo. and then 3x/wk for another 6 mo. and 2x/wk for the next 6 mo. I get tired just writing it! Very little of this PT will be covered, so most will be out-of-pocket. Also, we need to cover travel expenses, and all equipment needed. The physical therapy is really where the expense lies, so any donation that you can make, even $5, will assist towards helping Jackson.
If you can't donate, please could you share Jackson's Journey on your social media pages. It would be a great help.
Thank you for your support and consideration
SDR Saint Louis Children's Hospital Informational Video
Organizer
Damian Tattam
Organizer
Ipswich, MA
