Kasey is an eleven-year-old girl with the most gorgeous smile and contagious giggle. She was born after a textbook pregnancy to her proud parents and we could not have been happier taking home their beautiful daughter with the most amazing red hair. At 6 weeks, a routine health nurse checkup revealed Kasey was not making milestones and was failing to gain weight. She was extremely floppy like a rag doll. The hospital started an extensive investigation into the cause with many tests and scans failing to determine a diagnosis. Still to this day, Kasey has no official diagnosis and goes through new tests whenever it presents itself in attempt put a label on her condition.
Kasey has very low muscle tone, is non-verbal, incontinent, unable to walk, has sensory processing disorder, and is anaphylactic to many things. Although undiagnosed, we identify her condition similar to that of someone who has severe Hypotonic Cerebral Palsy.
Like most parents in our situation we have constantly searched and attempted many therapies that can potentially help Kasey improve her abilities and create the best quality of life for her. It is documented that children generally after the age of 6 who have CP will very rarely show any significant improvements to their physical and cognitive developments and disadvantages. In most cases, deterioration starts taking effect as soon as children reach teenage and adulthood- sometimes earlier. Within the public health system, unfortunately once school age is met, the child loses a lot of conventional therapy time such as physiotherapy, occupational therapy and speech therapy as it is the end of the most viable years of early intervention.
For our family, we did not want to cease any therapy that potentially could help Kasey and so we began trying a few more alternative options- many of which most had proved unbeneficial.
At the time, a friend of mine had spoken of Advanced Biomechanical Rehabilitation (ABR) and how she was seeing results in her child with severe CP. As she explained the concept to me, I knew this was something I really wanted to try. My excitement very quickly became deflated when she told me that they had to re-mortgage their house to pay for the treatment and fly to Singapore to do it. We had no ability to even contemplate this kind of money as we were in the process of trying to raise money in order to modify our house for Kasey's needs, as well as get a wheelchair adapted vehicle. This family too found the cost unsustainable and were forced to abandon the therapy.
In 2014, on a social media webpage, ABR was once again highlighted before me. I enquired and learnt that the therapy is now available in Perth with the therapists from ABR Asia now going there, all thanks to a wonderful charity called Bio Rehab for Kids. This charity was extensively fundraising in an attempt to make the therapy more attainable by subsidizing it with community-raised funds. I then discovered that a large portion of this funding came from Telethon who have continued their generosity in making Bio Rehab for Kids a beneficiary over the years since. Although there was still a cost involved, we were finally able make ABR a reality.
In September 2014, we started under the ABR program. The initial training was intense but highly motivating. Everything that was explained; from the mechanics of the body, to how things were needed to be done in order for damaged tissues to repair, just made complete sense. I knew this what I needed to be doing. One year later and my intuition had been affirmed. The before and after video reports proved that we were finally- after many years- making some positive transformations to Kasey's body. Her shoulders had broadened, opening the gap between her shoulder blades, her rib flaring had decreased and chest cavity deepened to allow deeper breathing. She had much better head control. I could never have imagined to see such good results in 12 months.
We just completed our second year of ABR and we are just amazed at where this path is taking us. Since a very young age Kasey has needed x-rays to monitor her hips. Due to her week muscles and ligaments her hip joints became displaced very early. Her migration percentage of displacement were at 36%. Her orthopedic surgeon who monitors the progression had told us that hip surgery would be inevitable, just a matter of when. Over the years we have managed to keep her hips stable with activities such as hydrotherapy and hippo-therapy at Riding for The Disabled. We thought it was the best they would ever be especially when we were told to expect a sudden deterioration in Kasey’s hips when she hits puberty.
Her first x-rays after starting ABR took us completely by surprise as they showed they had actually improved by 5%. The surgeon had put this down to marginal error and that they were most likely still the same. 12 months on and the next round of x-rays showed that her hips were now only 24% displaced (instead of the original 36%) and there was no way that it was marginal error. The surgeon had originally put Kasey on 6 monthly reviews as she is well into puberty and was classed as being in a critical period for development however even they are shocked by what her hips are doing. 6 months later and her hips have improved another 1% in the right direction with the surgeon now feeling confident that Kasey won’t ever need hip surgery. This is all thanks to ABR. We now feel confident that if we can continue ABR we can also turn her scoliosis around. Due to her rapid growth in height, scoliosis is becoming significantly worse. I feel ABR is my best chance at hopefully avoiding back surgery too.
Without ABR we would not see these wonderful results. A therapy that has proven to defy the standard medical beliefs. A therapy where there are no age barriers to when someone can start the treatments and expect to see results. Without Bio Rehab For Kids and the appreciated support from Telethon, ABR Asia would not be able to be bought to Perth. Knowing that we can be doing something to help improve our children's lives, means a lot.