Today I offer you an invitation to help change the path travelled by children with Cerebral Palsy and Brain injuries!
I have spent the last few months intensively researching a therapy approach called Advanced Biomechanical Rehabilitation (ABR).
* Family-Centered: changing the model of bringing children to therapy centers for years on end. Parents become the experts, and the therapy is provided in the home.
* Gentle/Non-Invasive: There is no danger of hurting a child doing ABR. It is not unpleasant or painful for them.
* Body-focused: It does not aim to heal, rewire or reprogram the brain. It’s goal is to improve the structural and functional elements of the body.
* Effective: I have never found a physical rehabilitation approach that resulted in gains for children with CP and brain injuries. Perhaps they slow the ongoing decline in the body, but functional gains are rare, particularly in the most affected children. The following video stunned me:
While the changes are notable, a little background will make clear how unusual these changes are.
I found that an NIH-funded study was conducted in the province of Ontario which included every child diagnosed with Cerebral Palsy born in 1992. Some families did everything possible to help improve the physical condition and capabilities of their children, while others did not have the means to do so.
The study found that it did not make a difference…no matter what was done, or not done, the children’s path followed an almost predestined curve. The most affected children reached their peak of motor capability at age three, and actually began to decline as they reached 10. Even the least affected children reached their peak before 10.
As a mother I have sensed this curve. I have fought against it, and tried in every way possible not to look it in the face. But, it is real, and, as we have found in these years of effort with Abbie, it is accurate.
And, it is not only the lack of improvement in movement capabilities, but even more pressing are the health issues and invasive interventions that accompany that unbudging curve. When liquid medications fail, we move to injections. When these don’t work, it’s time for snipping tendons and muscles. When these methods don’t stop the contortions, families consent to hip surgeries, spinal rod surgeries and the complications these bring, often while not halting the downward spiral.
We don’t make these choices because they result in great outcomes, or “fix” our precious children. We just haven’t had any options other than “bad” and “really bad”.
Well, my time spent looking into the mouth of the dragon eventually lead me to a third option, “responsible dreaming.” It is not a silver-bullet or overnight magic, but ABR offers the family willing to work for it, the chance to bend the curve in their child’s life.
If you watched that video, realize that the boy shown falls into the “most affected” category (GMFCS V), so his body should be fairly resistant to attempts at helping it improve.
Weeks of intense research convinced me that ABR will be the best approach to accomplish physical recovery in Abbie. But, over the years we have been blessed to meet families of other special children, and I knew it could really help them as well.
So, instead of flying Abbie to the ABR Clinic in Montreal for the initial evaluation and training, I am putting together a pilot group of families, and the Montreal team is coming here the first week of March. During that visit, they will also provide training to professionals so that eventually, if the results come as we believe they will, ABR in Hawaii can grow to the point of being available for every child who needs it.
So, what is it??
It is a hands-on, gentle, non-invasive therapy provided in the home by family and caregivers. The primary target is the myofascia, and the goals include increasing the volume and strength of the chest and abdominal cavities. It is a completely new way of looking at the bodies of children with Cerebral Palsy and brain injuries…and it’s about time!
Outcomes for these children have not changed much in the last 100 years. Splints are now made of fiberglass, neoprene and velcro instead of wood and leather. We can seat kids in shiny pink or bright red wheelchairs, and surgeries can keep their bodies looking more normal. But, they are not regaining function, they are not becoming more physically independent.
That has got to change. While we await the fruit of brain research ongoing in many sectors, we must help our children’s bodies to heal and strengthen. That is the mission of ABR — not fixing brains, but fixing bodies.
I hope this is not information overload, but I wanted to give you a glimpse of the new terrain that has us so encouraged. And, I need to ask for your help in making it happen.
The opportunity to have the ABR team come arose suddenly, and we’ve been working feverishly to put it all together. We have many of the pieces in place, but the big hurdle now is finances. The initial evaluation and 5 day family training cost $1900 per child. We must also raise approximately $3000 to cover the travel and lodging expenses of the team. In other words, we need to raise about $15,000 in one month.
I know that if you are reading this blog, you care about Abbie. Ray and I had planned on doing ABR from the beginning of this process, and will fund her portion. However, we have some incredible, dedicated families who didn’t even know what ABR is until December, and certainly hadn’t budgeted for it. Would you help us start this pilot group?
If 100 of you out there could find $150 to donate, we would be ready to go!
You can donate at the Chip-in widget to the right of the posting. I will deposit all the money into a newly created fund: The Rehab Family Training Fund of the Kapiolani Health Foundation. This will not be a deductible expense if you do it this way.
If you would like to donate directly to a 501(c)3 for tax purposes, you can send a check to:
Kapiolani Health Foundation
55 Merchant Street
Honolulu, Hawaii 96813
Please put “Rehab Family Training Fund” in the memo section to ensure the money is routed properly.
I post this update with prayers of thanksgiving for your support all these years, and with hope for the future of many children whose lives will be improved because of ABR.