Tuesday, April 12, 2016
Fierce Grace Brixton
Throughout the 7.5 years I taught for Michele Pernetta, teaching what has now become her brand: Fierce Grace yoga, Nigel and I have always remained close friends. I am delighted to return to London a few times each year to teach for him and his wife Katie's Brixton FG studio.
I believe it's remarkably easy to take mobility for granted when you are able bodied, especially when you are able to access an amazing yoga practice through Fierce Grace.
In 2007 my husband and I gave birth to a beautiful, intelligent and profoundly disabled little girl Sierra Rose. She is a bright, a wonderful spirit and has severe Cerebral Palsy. Moving back to Australia was a choice I made to take a job with a salary that would provide for my husband, Sierra and me while allowing for my husband to give primary care to our little girl.
The Australian Govt. pays for basic schooling and equipment but given the complexity of Sierra's needs the basics come no where near to what it costs.
In October 2015 we invested in Sierra attending physiotherapy in the UK focused on enabling her to use her hands to drive a motorised wheel chair. She was successful and for a child with severe disability this is a miracle.
Since October I have been raising funds to buy Sierra a motorised chair. The chair will mean an entirely new and exciting future of independence for Sierra both at school and at home.
Any donation makes a big difference. Thank you in advance for you generosity and kindness. Karen, Shane and Sierra xx
Wednesday, February 3, 2016
Meet Sierra

This little sweetie, Sierra Rose is 9 years old. She is bright, has an amazing spirit and has cerebral palsy.
In October 2015 Sierra attended physiotherapy in the UK focused on enabling her to use her hands to drive a motorised wheel chair. She was successful and for a child with severe disability this is a miracle.
This UK physiotherapy and many other OS trips accessing experts across the globe who can really make a difference in enabling Sierra to be go beyond her limits, have only been possible through the financial support of others.
Some of the highlights include: (*this blog has posts throughout where you can read about individual trips and specific results)
1. Sierra learning to use the muscles in her eyes with specialised contact lenses provided by a Prague specialist eye doctor
2. A massive improvement in Sierra's immune system after stem cell treatment (using her own cells) in a German stem cell clinic
3. Talking to her parents and teachers through a communication computer that is controlled by her eyes
Sierra Today......Since October we have been raising money to buy the motorised wheel chair which Sierra used while in the UK. The chair will mean an entirely new and exciting future of independence for Sierra both at school and at home.
Chair cost $13,000
Funds raised $1,700
We'd love you to contribute. Any $$$ amount will make a difference!
Come and join in the fundraising fun!
Wednesday, January 27, 2016
My friend Ravi
Tuesday, January 19, 2016
Sierra Today
Have a read through the recent posts and be amazed....Sierra is driving a motorised chair
£5850
Wednesday, October 7, 2015
Helping Hands trip...
Sierra was successful in starting to use her hands and in driving a borrowed motorised wheelchair for the first time. By the third day she was lifting her hand off and on the driving stick to change directions and reposition her hand. Very exciting to see.
Now I have new problem.. how do I buy that chair?
Sunday, September 27, 2015
Helping Hands trip...
I have planned this trip for months and yet on the third day of the physiotherapy with Tereza we had both a breakdown and a meltdown! I returned from an hour or so of the yoga training, just a few minutes walk from where we were staying. I found Tereza sheet white and angry. Not with me or with Sierra, but from what was a BIG day. Sierra had choked, had big seizures, spat out nearly all the food she had been fed and then angrily tried to eat the spoon out of Tereza's hand due to hunger and probably dehydration.
Tuesday, September 22, 2015
Helping Hands trip...
Both the therapists I have flown over from Prague last week and now this week have been working with children running Hippotherapy camps for many children and families.
"Hippotherapy is a treatment method of physiotherapy (rehabilitation) which uses a specially prepared horse, specifically the movement of his back during a walk, to provide therapeutic effects. This movement is alternating and repeats rhythmically and cyclically. It offers stimulation for all senses and this directly influences motor behavior of the client through the activation of all levels of central nervous system. Our main aim is to improve neurological functions and sensory processing in children with various health disorders."
One of the ideas I am starting to consider is about collaborating the efforts between the UK and EU therapists even further next year....
The farm where we are accessing treatment with Anel this year is the home of a child with complex needs like Sierra's. They have built a property that has a hydrotherapy pool, therapy rooms and stables with horses, all of which the family intend to offer for other children with disability.
One of my commitments is to empower families like mine to access a global approach to treatment. While some of what each country offers is excellent, I have found that a combination of the various approaches, at different times of Sierra's journey, has been most impactful.
I see a possibility of supporting other families accessing treatment that is not available where they live.
If we were to have the Czech physiotherapists working from the same place as the UK therapists for a couple of weeks next year, and encouraged families to access the therapy all together it would be easier.
Something like: one week of Hippotherapy in the morning, physiotherapy in the afternoon and a couple of hydrotherapy sessions. I think it would be great for the parents as well!
Food for thought!
Monday, September 21, 2015
Helping Hands trip...
Friday, September 18, 2015
Helping Hands trip...
Saturday, September 12, 2015
A week to go 'Helping Hands'....
Friday, August 21, 2015
Anel van der Merwe
Early Intervention in Cerebral Palsy from a Paediatric Physiotherapist’ perspective
Let me perhaps start by explaining what Cerebral Palsy and Early Intervention means.
Cerebral Palsy is a very broad term given to disorders of movement and posture. The damage to the brain is in the different parts of the brain that are responsible for controlling movement. The damage is permanent but not progressive, but because we work with children who are growing, we see symptoms which appear progressive i.e. children might get tightness in their muscles or develop deformities such as curvatures in their spines which may require surgery. Other parts of the brain responsible for functions such as communication, hearing, vision and the ability to learn may also be affected. The lesions in the brain could be sustained before, during or after birth before the second year of life.
Early intervention is a term that is often used when it comes to treating children with Cerebral Palsy. It is to be proactive with assessments and treatment for babies where there is an indication that they could have possibly sustained a brain lesion and would likely be diagnosed with Cerebral Palsy later on in life. A range of professionals are involved including a Paediatrician, Health Visitor and Physiotherapist to name but a few. The purpose of early intervention is to reduce the likelihood of poor long-term outcomes for children and their families. Early intervention does not mean preventing or curing. It is important that early intervention starts at the earliest possible point when the baby is medically stable and preferably before problems appear. My philosophy is that it is better for a baby to receive treatment and optimise their development, even if they are not diagnosed with Cerebral Palsy at a later stage than to ‘wait and see’ and waste valuable time and have their development compromised.
It is also important to understand how the brain develops early on in life in order to understand the theory behind early intervention. I’ll try to explain this in the simplest way possible. A baby is born at 40 weeks gestation with roughly 100 billion neurones already developed in theirbrain. There are enough neurones to last a lifetime. You can imagine these as a multitude of small trees with many branches and leaves. Initially the baby’s movement is made up by innate patterns/responses andmovement that is already acquired in the womb. With this very basic repertoire of movement the baby will start experimenting, sometimes accidently, and as these new movements are repeated, the leaves of different ‘trees’ will start making connections and as these movements become more refined and skilled a process known as pruning will take place where some of the branches and trees will be reduced to make the brain environment less cluttered.
The more the connections are used the more they becomestronger and well organised pathways and the movement are no more experimental. The messages that are sent across these pathways can therefore be sent quicker and more efficiently and this results in skilled movements becoming smoother and more automatic, i.e. it is not a carefully thought through process any longer but rather just happens almost without thinking. This process counts for the repetition of normal and poor/abnormal movement that could therefore also lead to poor habitualmovement patterns which could lead to further difficulties.
If movement is not repeated the brain interprets it as irrelevant and discards the connections, this is better known as the ‘use it or lose it’ phenomenon. You could say the brain is building up a memory bank with lots of strong connections that it can use subconsciously. In time with a bigger repertoire of movement connections, the brain can assess a situation and select in an instant which movement patterns will be most appropriate and this forms part of an individual’s problem solving abilities.
The process where connections are made is known as myelination and is optimised in the first year of life. After infancy, myelinisation continues until the age of about 40 and, although it is never too late to make changes, it is easiest to make changes in the first year of life particularly if there are difficulties with a baby’s development. If you’d like a very good more in depth explanation of the neurophysiology of the developing brain and you are up for a heavy but interesting read then I can highly recommend the following article: Early Diagnosis and Early Intervention in Cerebral Palsy, 2014 by Mijna Hadders-Algra(http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4173665/#B1330). This article does however conclude that there is very little research evidence into whether early intervention is effective and that more research is desperately needed to guide best therapy practice.
Having worked with children with Cerebral Palsy for more than 16 years it is my experience that the majority of children with Cerebral Palsy are not referred for therapy soon enough and that there is often an attitude of ‘your baby is only delayed and they will be ok by the time they are 2 years old’. This is despite parents continuously raising concerns.
In my opinion if there are any high risk indicators, such as a baby being born early (32 weeks gestation and earlier), poor Apgar scores at birth following a traumatic birth, scans indicating any bleeding or cysts, a baby should be regularly assessed and treated proactively. There are neuroimaging assessments (e.g. MRI and CT scans), neurophysiological assessments and several neuromotor examinations that have diagnostic properties that could be used alongside clinical observation by an experienced clinician. One diagnostic neuromotorexamination is the Prechtl’s method on the qualitative assessment of general movements. This assessment method is used for the prenatal and postnatal evaluation of the integrity of the nervous system and is now proved to be the best predictor for cerebral palsy at a very early age i.e. before or the first few weeks post birth. Hand in hand with this assessment, Bobath trained therapists are equipped with excellent observational skills and detailed knowledge of typical child developmental movement patterns. A therapist with this experience is therefore able to observe subtle abnormal movement patterns and muscle tone. A diagnosis of cerebral palsy is not necessary for a Physiotherapist to start treating a baby/child especially as this may not happen until the child 18 months old, it is however important that if a child has Cerebral Palsy the diagnosis is made as soon as possible to ensure a baby/child is supported holistically. Traditionally a child is formally diagnosed at 18 months because this is the time when developmentally a typically developing child has reached the majority of their gross motor development and a concrete comparison can be drawn. With all the modern diagnostic tools and clinical expertise combined this can be significantly brought forward.
So if there is not concrete evidence whether treating a baby early has a positive long-term outcome then why am I advocating this approach? During my Physiotherapy training in South Africa we had a fourth year project in a very rural part of South Africa. It is culturally the belief of the residents that if a child is disabled forefather spirits possesses them and they are therefore ‘locked’ away in dark rooms. With the help of a local Physiotherapist, a local school and a few mothers that volunteered we managed to persuade several families to entrust us with their children and care for them during the day at the local school. We trained up the mothers in handling and communication skills and how to feed the children in a safer way. Why I’m sharing this story is that most of these children, who never received any therapeutic intervention, suffered with severe contractures and deformities and were significantly delayed in several areas but particularly in communication. Some of these children could not be placed in a seated position due to the contractures and had to be positioned in a comfortable lying position. This experience is etched in my memory and as I’m now working in a first world country, we don’t see the effect of no therapeutic intervention. I get passionately upset when there is suggestions that therapy is not effective based on the fact there is poor or no research evidence. Later in my career as I’ve gained more experience I’ve learned that due to abnormal muscle tone, children learn compensatory strategies in order to move up against gravity when they have abnormally high or low (or combination of the two) muscle tone. In the select few children whom I have been privileged to have treated from an early age, i.e. before the age of one, I have learned that by influencing the muscle tone through handling techniques you are actually able not only to change movement patterns but to reduce/minimise the use of learnt compensatory strategies.
I’ve also experienced that when you start treating children later, you spend a lot of time helping the child to ‘unlearn’ habitual compensatory strategies or bad habits. So apart from the actual potential changes we suggest happen in the brain and that we can influence with early intervention, there is also a large element of not allowing poor strategies to develop in the first place. I have to state that this does however require frequent hands-on Physiotherapy input by an experienced Paediatric Physiotherapist in partnership with the child’s parents following through with handling techniques throughout the course of everyday.
I recall the countless times I have hear parents say, ‘we were told that our child will never walk, talk or understand anything and now look at him/her …’. I encourage every parent who has a baby and have ANY concern in there development to seek therapeutic intervention even if you are told countless times that everything will sort itself out. Always trust your parental gut instinct. And for all the parents who have older children that have been diagnosed with cerebral palsy and have not had the chance at early intervention don’t be discouraged, it is NEVER too late to start making a difference!
Anel van der Merwe
Member of the Chartered Society of Physiotherapy
Clinical Specialist Paediatric Physiotherapist
Please visit my website www.childreninmotion.co.uk if you wish to learn more about what we do and/or if you’d like to make contact.
Saturday, August 15, 2015
Helping Hands!!
We have a physiotherapy intensive booked for the last two weeks of September. We will be working with Anel van der Merwe www.childreninmotion.co.uk who has worked with Sierra since she was 5-6 months of age and is by far the best physiotherapist we've found for Sierra's complex needs. In addition I have now confirmed Tereza Honcu to work with Sierra in advance of, and Anna Dobisova to work side by side with Anel during the week of September 28th - Oct 2nd to loosen her upper body up and provide additional support. Sierra is now at an age and body weight that I cannot do an OS trip alone. Previously I have flown a carer from Australia to help. Tereza http://www.caballinus.cz/fotogalerie-akce is an excellent physiotherapist from Prague who has also supported Sierra from the first few months of her life and Anna is one of Tereza's peers. This time I am flying the two girls for one week each to support us. The care, physiotherapy and return flights are less than it costs to fly someone from here! I am so happy with the way all the pieces of the jigsaw are coming together, mostly because I know these therapists really connect with Sierra, and I feel confident it will make a significant impact to her function.
The next thing to secure is accommodation...
Any 'helping hand' that you can offer will be appreciated, any amount makes a big difference. Karen, Shane and Sierra x
Saturday, August 8, 2015
Helping Hands!!
We were able to get Sierra's hands to open from tight fists when we did Stem Cell therapy in her early years. We have enabled her hands to stay open (against the pull of the spasticity to revert back to fists) with Botox, hand splints and physiotherapy. It's now time to put those cute little hands to work!
The first challenge will be to loosen Sierra's upper body such that she can get the most from another physiotherapy intensive focussed on enabling her hands. The intensive will then need to be followed up by Shane and my efforts by applying a 6-12 month home program.
We have booked in with Anel van der Merwe www.childreninmotion.co.uk for the week of September 28th - Oct 2nd for this physiotherapy intensive. The price will be £800 for 2 x sessions each day and the home program to be written up. Anel has been Sierra's physio since she was 5 months old and is by far the best Bobath therapist we have ever worked with. In addition she has partnered with Shane and me year on year in advising us how to take Sierra far beyond where others thought she could achieve.
I have also found the right person to work with Sierra ahead of the physio intensive to loosen up her upper body in preparation.... more to come!
Any 'helping hand' that you can offer will be appreciated, any amount makes a big difference. Karen, Shane and Sierra x
Saturday, August 1, 2015
Helping Hands!!
This September we have booked Sierra in with Anel van der Merwe www.childreninmotion.co.uk (the most competent therapist we have found, and Sierra's physio of 8 years) to work specifically on obtaining more functionality with her hands.
Any 'Helping Hand' that you can offer will be appreciated, any amount makes a big difference. Karen, Shane and Sierra x
Wednesday, December 31, 2014
Goodbye 2014
Sunday, June 29, 2014
200 Amazing Angels Appeal
Sunday, June 8, 2014
Reality Cheque
Yesterday, time stood still while I watched the Doncaster Primary School Principal, Sierra's teacher and another staff member read through 7-8 different wads of paperwork, all with several highlighted sections outlining how the school are not able to meet Sierra's needs. Their answer is to send her to a "special school"; everything Shane and I have stood for slipping through my fingers and all I could do was listen and hear them fully. The bottom line is that we have not had the money to pay $300 per week, for bi-weekly $150 appointments for Speech and Language, Physiotherapy and Occupational Therapists to go into the school and train the school aides. The CPEC (Cerebral Palsy Education Centre) advocate that came with us to the appointment has worked for years in special schools. For several years she has helped integrate children, like Sierra, into mainstream schools and firmly believes Sierra is intelligent and perfectly capable of being in mainstream school. But without funding, she cannot remain there. A line in the sand has been drawn. Shane and I have until Tuesday to work out an acceptable solution.
I have called a meeting with some of Sierra's Angels tomorrow to discuss a possible fundraising campaign to raise £25K annually by having people contribute a monthly donation.
Last year I pulled out all the stops and went for all the public funding I could find. Shane was fatigued and after years of people suggesting, "There must be something that the government can give you?!" and asking, "Well isn't that funded by the government or something?" I went for it and I exhausted every funding body I could find in Australia and filled in every funding application I could find in Victoria to give Shane, Sierra and I a better quality of life. It helped with the funding of some respite and a couple of pieces of equipment.
We were also allocated the level 6 (maximum) funding for school, and were accepted on the disability support register with the government (money we won't see for years because we have to wait for someone to pass away to get allocated their amount and at the high rate that Sierra needs only 3% of people ever get allocated at all.....straight from the mouth of the DHS government representative himself).
It had to be done and if I hadn't gone full out in this direction, we wouldn't have found our incredible carer Melissa. And Sierra would not be in mainstream school.
On the other hand, it had a significant impact on my health and nearly cost me my job with the hours I dedicated to making it all happen.
Shane and I are exhausted and with a huge appreciation for the incredible generosity of everyone who has contributed to Sierra's quality of life!
Currently we have no further physiotherapy, speech and language, occupational therapy appointments booked to help the aides in school with how to help Sierra learn, sit safely, avoid contractures and sores from sitting all day, changing her and supporting her using her communication book and computer due to no further funding availability. Unbelievably there is virtually NO funding available for kids between 7-13 years old. In addition, there are the O/S trips to train our carers and work with the UK physiotherapist who creates a home physiotherapy program and to visit the European doctors (all who provide additional input or therapy that we have not found here).
I had believed that if I actually did the work and approached all those funding bodies that people said "must be out there" and went to the government and actually lodged the DSR, I would not have to come back to my friends and family again.
It breaks my heart that with everything that people have given us over and over again that we don't have what we need.
One of the initiatives that a Sierra Angel came up with once was a £10 a month scheme. On reflection it is by far the best idea overall. I have approximately 15 people who contribute in this way. This has benefitted us is that when Sierra and I do the O/S trips there has been money in the UK account to pay for the physiotherapist and other appointments. I am now proposing we extend this initiative to cover all of Sierra's therapy.
Why I like this initiative the most is because it's sustainable and if someone asked me to participate in this way I know I would if I believed in the cause.
If you are willing to help or ask others to do this you will see at the bottom of this blog my account details for both Australia and the UK. Any annual, monthly or weekly amounts will be greatly appreciated.
My target is £25K annually because it really does take that and more.
That's just over 200 people at £10 per month.










