Happy Holly.

Holly was 14 years old when we first met her in 2004.  She had and still does have, the most endearing personality.  She was so sweet and happy every single time we worked with her over many years.  Holly has a condition called Williams syndrome.  Williams syndrome is a rare genetic condition caused by missing genes and occurs in approximately 1/10,000 births. It is characterized by medical problems, including cardiovascular disease, developmental delays, and learning disabilities.  People with Williams syndrome also usually have characteristic facial features. 

On the upside for Holly she was always cooperative and willing to have a go, as long as she felt safe and secure in what we were doing.  Her love of talking and chatting and her expressive language skills always made her Heartwell sessions fun.  Another Williams syndrome personality trait includes people being excessively friendly and trusting of strangers.  We usually had to keep an eye out to make sure Holly’s general exuberance for life did not “freak out” any of our milder mannered children that may have been having a session at the same time.

And Holly loved music.  She would bring her own CD’s in and we would have to play them loud and proud.  And she would sing along, loud and proud.

One of Holly’s medical issues were her internally rotated hips, coupled with shallow hip sockets and pronating feet.  As a result, Holly would often stand with her knees close together and feet wide to gain better balance.  One of our challenges at the Heartwell Foundation was to strengthen her lower limbs, so she could stand taller and have better balance.  Of it course all of that needed to be achieved while having fun!

One of our memorable achievements with Holly over the years was her learning to safely use the gym cardio equipment.  Holly had a great fear of being off the ground and a fear of moving and noisy objects.  Her parents were so delighted when they witnessed her jogging on the treadmill for the first time.  It was a great step forward for Holly to have a life long love of exercise.

Holly and Scott in the gym

Graham and his Leg.

We first met Graham in July 1997.  At that time he was 15 years old, 6 foot 2 inches and weighing in at about 110 kgs.  A big boy, with a gentle and caring personality.  When he spoke you would expect a loud booming voice to match his size, where in fact he was quietly spoken and I often had to lean close to him to hear what he had to say.

He was referred to the Heartwell Foundation by the physiotherapy department at RCH.  On almost 12 months to the day that we met him, he had had a left below knee amputation for bone cancer of his left tibia and tarsal bones.

Prior to that, he had complained to his Mum a few times of an aching leg, as growing kids often do.  I find even today, if I listen too hard to every ache and pain my three children report to me, I would have no time left to process any other information in my day.  There is a filter there, to help mothers get some things done!  When a bump appeared on Graham’s leg it was time to go to the Doctor.  He was very lucky that his cancer was contained in just the bones of his lower left leg.  By having his lower leg removed, he was able to go on and live an active life.

He was fitted with a “new leg” in the February 1997.  He had to attend a gait re-training program and then he was keen to start running and playing sport again.  At that time he had  poor fitness and he fatigued easily.  He needed to learn to balance his body under these new conditions.

As Graham developed confidence in his artificial leg he wouldn’t mind showing it off.  Once or twice out of the blue he kicked his leg off during a session, just for a reaction.  For example mid way through a skill session on kicking, off it flew - on purpose.   This created great amusement for him, but the kids around him almost died of shock!  

We had some fun with Graham.  We watched him grow up over those late teenage years.  He will be turning 31 years old this year.

Graham during a pool session in 1998

Jay and his Achievements

The attached is a story about Jay which appeared last year in the NoticeBoard magazine - (Assoc for Children with a Disability).
**I have now updated this post since my blog does not allow for attaching a pdf.  I have now attached the information from the above article in a document format.  Does not look as pretty but I hope you get gist of it.

Jay had a tumour on his hypothalamus which has been there since he was 7-9 weeks gestation.  The tumour was benign but affected his balance, coordination, and motor skill development.  When he came to the Heartwell Foundation in 2004 he had recently had surgery to remove the tumour.   At that time his skill level was basic and he had quite poor self-esteem. 

It is now wonderful to hear from his Mum, and know he is doing so well.  Please read on.......

From: April James 

Sent: Thursday, 29 April 2010 3:11 PM

To: scott@heartwell.org.au

Subject: Jay Ellis-James

Hi Scott and Julienne,

Jay at Run for the Kids 2010

I wanted to drop you a line because, although I'm sure the 3 years Jay spent with you guys is now a distant memory, the time he spent with you has never been far from our minds and I wanted you to see the lasting impact you've had in our lives. The time Jay spent with Heartwell taught him skills and discipline that continue to serve him well all these years on. 

Jay and I have done the Run for the Kids for 3 years now and this year we upped our participation from the little run to the big one. A massive ask for Jay, who still plods along at his own pace and could only run just over 1 km when we started training. But his pace was pretty impressive by the time the big day arrived, he ran 14.38kms in 1:48:51! Not only did he finish the race still jogging, but he told me that he only walked when he was having a drink stop, he even managed to keep up his pace over the Bolte Bridge!

As you can see from the pic, he looks pretty comfortable with his stride and happy to be there. I really think that this photo would never have happened without the skills Jay learned during his time at Heartwell. Without the lessons you taught him I don't think he would have had the confidence to get in there and give it a shot. 

And he already has a new goal, next year he wants to complete the course in under 1 hour 30.... I don't think that's going to be a problem at all.

He's still not very interested in sports, but he does participate in PE now and he still gets out on his bike and rides around, another skill I'm sure he only picked up because of the confidence you taught him. 

So I wanted to thank you again and let you know that we'll be forever in your debt.

Regards,

April James

Heartwell celebrates 15 years

The Heartwell Foundation celebrates its 15^th birthday this year.  Established in 1997, Heartwell has provided its specialist physical education and rehabilitation services to many hundreds of Victorian children with varying levels of need.  Co Founders and service providers, Julienne Espenschied and Scott Taylor have wide ranging experiences in physical education, working with children in this unique field, in and out of the school setting.

Their real passion is to assist children with illnesses and disabilities to access quality designed programs to increase their general health and fitness, fundamental sports skills and self confidence.

“The Heartwell philosophy is a simple one” says Julienne.  We see access, opportunity and participation as the cornerstone of our programs.  We deliver physical education programs to equip children with special needs with the skills and confidence for greater participation in school and community based activities”.

“We established the Foundation based on our work as a service provider with the Transport Accident Commission and the programs we conducted for children involved in road accidents.  Insurance covered the cost of many services including Heartwell, but we were getting referrals for many children who had similar needs but were not covered by insurance.  Children who had fallen from trees, had cerebral palsy, spina bifida or brain tumours received little in the way of compensation, so the Heartwell Foundation was established to meet this discrepancy in health care”.

Children involved in Heartwell range from 4-21 years of age with wide ranging needs and abilities.  Access to Heartwell programs occur at any time of the year via referral from a member of a child’s medical team or school.  Children undergo initial evaluations of fitness parameters and skills performance which form the foundation for their program and assessments are conducted regularly to monitor progress.

Seeing improvements in fitness levels and skills development is rewarding for all at Heartwell, but the biggest thrill comes from witnessing confidence and self-esteem increases.

“Having a child with a disability can present many intricate and interrelated health issues for parents and certainly decrements in cardiovascular fitness, strength, endurance and flexibility are high on this list.  We know how important general health and fitness levels are for children generally, but certainly for those with special physical needs, education about the benefits of long term exercise involvement is paramount”.

Heartwell Co-Founder, Scott Taylor puts it more succinctly.  “Heartwell programs are special and unique.  All kids need to be active and the benefits extend far more than just in physical gains. Parents will regularly say to us - thank you for giving my child the skills and confidence to participate in activities that they wouldn’t have necessarily attempted to be involved in beforehand”.

We have an unshakeable belief in the benefits of physical activity and have worked with some amazing children and families over our 15 year history.  The walls of the Heartwell gym are covered in the faces of smiling children each with their own life story to tell.  We at Heartwell feel very lucky to have worked with some amazing children who have taught us a lot about ourselves.  We look forward to continuing to offer Heartwell programs to many more families during the next 15 years.

For more details on the Heartwell Foundation you can visit www.heartwell.org,.au or contact directly on 9842 0396, email info@heartwell.org.au

Jay and Scott Taylor in 2006

Going For Gold!

Sam is Short Statured with Kyphoscoliosis.  Kyphoscoliosis describes an abnormal curvature of the spine. It is a combination of both kyphosis and scoliosis. Kyphoscoliosis is a musculoskeletal disorder causing chronic under-ventilation of the lungs and may be one of the major causes of pulmonary hypertension (abnormally high blood pressure in the arteries of the lungs. It makes the right side of the heart need to work harder than normal).

Example of Kyphoscoliosis in a 10-year-old girl

What that meant for Sam is that when he was first referred to the Heartwell Foundation at the age of 13 years old, he was 123 cm’s tall.  He had already had three spinal fusion surgeries, along with hip surgery.  Further future surgery was planned for him to prevent more curvature of his spine.  

All of this caused Sam to have poor mobility.  He often had back pain and sore and tired legs.  So with all these challenges to face together we embarked on Sam’s Physical Education program.

Swimming for Sam, was ideal for many reasons.  It was non weight bearing, and took all that pressure of his spine and the muscles in his back.  It also provided an opportunity to develop Sam’s lung capacity, through ventilation exercise in the water.  He enjoyed the activity and made steady progress.  

Sam loved to play tennis, although it was not always easy for him.  So in addition to his swimming program we worked on his tennis skills and mobility around the court.  As he got older he also worked hard in the gym, doing some light resistance training and pushing himself on the cardio equipment.

He was part of the Heartwell team for three years.

The last time we saw Sam was on the television news and then again in the newspaper.  Turns out he has done all right for himself and become quite the celebrity!  Especially in the world of Short Statured sport.  He now represents Australia in the Short Statured Basketball Team. He is currently preparing for the Sixth World Dwarf Games to be held in Michigan, USA, from 3-10 August 2013.  

Well done Sam.  Bring home the gold.

Some Australian Boomers meets some players from the Australian Short Statured Basketball Team.

Boomers meet the Australian SSBT

Australian Short Statured Basketball Team

Hello Old Friends

Hello to all our old friends.

One of the things I am really enjoying about starting this whole blog thing is the re-connection we have had from many past families and children.  We have had literally over a thousand children come Through Our Door over the years of the Heartwell Foundation operation.  That is at least another thousand posts still to be written.  Phew!  

Many of those we have stayed in contact with, yet many drift on to new challenges in their life.  We often wonder what different children might be doing today, how they have faired, and what life has held for them as adults.

It has been wonderful to hear from some of these old names and faces as this blog has been forwarded around Melbourne.  Please keep passing this on to friends and family.  That way we can be assured that the people who need our service know where to find us.

For now however, I would like to say a “Big Hello” to:

Joel O, Tracy N, Charley B, Cameron R, Joseph C, Adrian S,

Great to hear from you guys, please stay in touch. 

   

1997

1998

2006

2007

Katherine and another good session.

Just had another good session with Katherine!

She is 12 years old and very sweet.  She has had a diagnosis of Global Developmental Delay (GDD) which means she requires a modified curriculum and much support when she is at school.  This diagnosis means her motor skills, her speech and language, her cognitive skills (the ability to learn new things, filter and process information, remember and recall, and to reason) and her social and emotional skills (including interacting with others) can all be delayed or developed at a different rate to her friends.

What this all means for Katherine is that in the school grounds it can be tough for her to keep up with her peers when they are running around and playing.  It can be difficult to have good self-esteem and confidence when you have GDD.  It can be difficult to just “fit in”.

When Katherine is with us at the Heartwell Foundation she displays a strong sense of belonging.  She does fit in and she works well.  Today she trained on the treadmill, then the cross trainer, then did a few minutes on the stationary bike.  She was puffing.  Then we moved outdoors and continued our work on her throwing and catching skills with small balls.  This was achieved through a simple game of one on one Cricket, where she also practiced her striking/hitting and hand-eye coordination.

Just had another good session with Katherine!  

Katherine and myself, waiting for Mum to come and pickup.

The Prince of Wales meets Heartwell

Back in 2005 the Heartwell Foundation children and staff had the opportunity to meet Prince Charles the Prince of Wales.  Don’t ask how this opportunity presented itself, it would be too complicated to explain.  More than likely it was one of those situations where someone knew someone, who knew someone else, who thought it would work well.

And it did.

Picture the following group  all gathered on the main courts of the State Netball Centre.  Most importantly, seventy children from the Heartwell Foundation all with varying levels of physical and cognitive function, also a respective parent (or two and even grand parent if they had wangled it with us), a team of Heartwell staff and The Prince of Wales himself along with his large entourage.  That included all the media personnel following his tour and the massive security team that also was accompanying him.  It was a mixed bag of “pompous poms” and excited Australian children, all glad for the opportunity to miss an afternoon of school.

Our challenge was to set up an activity circuit where all the children could participate and have some fun.  We had to cater for the kids in wheelchairs, those on frames, those with poor balance and those who could not see.  All this had to appear to be running smoothly so that when His Royal Highness walked through it would look impressive and not like the mad scramble it really was!  HRH was supposed to be impressed by this Australian program which provides physical activity for children with disability.

Somehow we pulled it off and had lots of fun.  It was a great experience for us to meet someone so famous and the parents were excited too.  I don’t think the children were all that impressed by HRH (with all due respect to Prince Charles) for them, it was all about the fun.  

All except for one of our teenage boys, Nathan.  Fifteen years old, six feet tall with a developmental delay that allowed him to speak his mind and act on his impulses.  The Heartwell team had been given very strict protocol on approaching and speaking to HRH.  In fact it was only Scott, my fellow Director, who was given permission by the entourage to come within 3 metres of The Prince of Wales.  All this had been documented and discussed well before the day of the event.  All the staff and parents understood that this strict protocol must be adhered to.  Unfortunately we forgot to tell Nathan.  Unexpectedly he left his group, marched up to HRH and before the security could intervene thrust out his hand and said “ Hello Prince Charles, my name is Nathan-Welcome to Australia!”

Whereby Prince Charles took his hand and said “Thank you Nathan thank you”

It was a happy and memorable moment. 

A bike and an Acquired Brain Injury

Kerry*  was 11 years old when she was found unconscious on the side of the road.  It was January 1996 and she was on school holidays.  Great day for a bike ride.  

What really caused Kerry to come off her bike we will never know because there was no witness to the event.  Her fall however, had resulted in her sustaining a severe penetrating brain injury, where the handle bar of her bike entered the right side of her skull.

She spent the next 7 days in intensive care as doctors battled to manage the hemorrhaging in her skull and her ongoing raised intracranial pressure.

She then went to a Rehabilitation Hospital.  Where she remained for 10 months.  Then she went home, where as an outpatient she had physiotherapy, occupational therapy, speech therapy, and hydrotherapy.

All this therapy had to be overseen by Kerry’s dad.  In an another sad part to Kerry’s story, her mum had died of cancer while Kerry had still been recovering in the rehab hospital. 

Kerry came to us at the Heartwell Foundation about 18 months after coming of her bike.    An Acquired Brain Injury (ABI) is an awful thing to happen to someone and the difficult thing for us can be, imagining what life should have been for that person.  At 12 years old Kerry was tall and blonde and full of personality.  Her brain injury however had affected her physically.  Her left arm and leg had poor and limited function.  This made her very unsteady and created a high risk of falls.  For long distances she needed a wheelchair but her weak left arm meant someone needed to push her.  She had cognitive deficits and auditory processing difficulties both of which meant she required much cueing and prompting to follow instructions.  Behaviorally Kerry also had some problems.  She could be aggressive at times and impulsive.  Initially she had poor insight into her situation and  her new limitations.  

“While research has demonstrated that thinking and behavior may be altered in virtually all forms of ABI, brain injury is itself a very complex phenomenon having dramatically varied effects.[2] No two persons can expect the same outcome or resulting difficulties.[2] The brain controls every part of human life: physical, intellectual, behavioral, social and emotional. When the brain is damaged, some part of a person's life will be adversely affected.[2] In children and youth with ABI the cognitive and emotional difficulties that stem from their injury can negatively impact their level of participation in home, school and other social situations,[5] participation in structured events has been found to be especially hindered under these circumstances.[5] Involvement in social situations is important for the normal development of children as a means of gaining an understanding of how to effectively work together with others.[5] Furthermore, young people with ABI are often reported as having insufficient problem solving skills.[6] This has the potential to hinder their performance in various academic and social settings further.[6] It is important for rehabilitation programs to deal with these challenges specific to children who have not fully developed at the time of their injury.[5] 

Kerry came to the Heartwell Foundation for a specialised Physical Education program.  The aim was to overlap with her physiotherapy program to develop better muscular endurance, strength and flexibility.  Kerry also needed to relearn her fundamental motor skills lost in her accident.  Being only 12 years old she had a lifetime of activity ahead of her.  She needed to develop the confidence to be active again.  She needed to participate in school and community sport.  She needed to relearn feelings of “can do”.  We worked with her on the fundamentals of throwing, catching, striking, kicking, jumping, bowling and swimming.  While at the same time, fitness development was crucial.  We had particular success with school based sessions where the school curriculum was implemented into Kerry’s individual sessions.  She enjoyed that-especially the attention!

We worked with Kerry for many years, on and off.  Depending on her health needs and other things going on in her life.  The activity which eventually Kerry found an enthusiasm for was a gym and swim program.  Yeah!  She had developed into a competent swimmer and she learnt that complementing that activity with resistance training would be really good for her health.  

The last time we saw Kerry she was “working out” in her community gym.  We remember her as a young girl and then a teenager, where in fact she is 27 years old now. 

*Names have been changed for privacy reasons.

Triplets

Recently the Heartwell Foundation had a referral for two children, brother and sister, who were born as triplets.  Both of the children have been diagnosed as having Cerebral Palsy, spastic diplegia.  They are 12 years old.

Being the mother of 11 year old twins, I had immediate feelings of empathy for this family.  That is, I understand the work load associated with a multiple birth and the chaos of the early years.  The stress of feeding, bathing, lack of sleep etc.  It does not necessarily get easier as the years roll by either, because by then the children need constant taxiing to their after school sports, activities and friends, and so on.

Then I made the phone call to discuss the referral with the mother of the children.

My feeling of empathy was quickly flooded by my inability to even imagine how this amazing family survive.  The third triplet is on Life Support requiring 24 hours, 7 days a week of oxygen.  She requires constant suctioning to clear her airways and is fed intravenously.  One parent needs to be with her at all times, and there are frequent trips to the RCH.  The two children with Cerebral Palsy have very different health needs.  They want to run and be active.  They want to improve their balance and coordination and reduce their ankle and knee pain.  They want social interaction and fun!  

I can’t imagine how difficult it must be for these parents to feel that they meet all these varying health needs of their precious children.

It certainly made me stop and think before complaining about taxiing my tribe to where they need to go!!

Kris

Kris had his first day of Year 12 yesterday.  A big day for any kid.  He is really smart and quick witted and we know he will do well this year.  He is a “tough cookie” our Kris, and he consistently works hard against the odds, that are sometimes stacked up against him.  See although he is quite academic and achieves good results in the classroom, Kris’s body can sometimes make the going hard work.  Kris has Cerebral Palsy - moderate to severe Spastic Diplegia.  This results in him having limited mobility and poor balance.  He walks with two single sticks or uses a wheelchair for long distances.  It is difficult for us able bodied people to imagine getting from classroom to classroom under those conditions, and still have the energy for learning.

Kris almost needs a gold watch for his time spent with us at the Heartwell Foundation.  This is his 10th year of participation!  That even surprises me as I write it.  He started with us when he was a cute little nine year old.  Although he was small and seemingly frail, even back then you got a sense of his determination and drive to be successful at all things.  Over the years we have watched him grow tall and strong (and noticed last year he started to shave!)

Kris in full flight,
chasing down a ball.

An avid cricket follower Kris was here when a few years ago Shane Warne visited the Heartwell Foundation.  There was no way we could keep him away from that little opportunity.  Another happy memory is of Kris last year participating in his school cross country event.  In a display of absolute grit and courage he walked about 500 metres to the finish line.  What a champ!

Good luck at school this year Kris, you are a legend.



Kris (far left) meets Shane Warne along with some other Heartwell Foundation crew. 



Little Spiky Haired Blonde Boy

Today I want to send all my love and positive thoughts to a dear little spiky haired blonde boy, who has been a Heartwell Foundation participant for the last three years.  A nine year old gem, he was initially referred to Heartwell to help with his diagnosis of “Kabuki Syndrome”.  This condition impacts his processing of sensory information thus causing difficulties with his motor skill development, concentration levels and social engagement with his peers.  

None of these “difficulties” have been able to dull his delightful, bubbly personality.

Unfortunately we were contacted by his parents yesterday to inform us that their beautiful boy has recently been diagnosed with Leukaemia.  He is currently undergoing intensive treatment for this.

His family are optimistic about his future and we ask that all the Heartwell community send their love to them all.  We want him back here with his cheeky disposition, chasing balls and lighting up our gym, as soon as possible.

My Friend "Wheels".

Amanda is her real name, but I often call her Wheels.  She is very special and over the years of knowing her, she has inveigled her way into my heart.

I first met Wheels in 1996 and she had just turned 13 years old. She had been involved in a motor vehicle accident when she was 10 year old.  At the time of the accident she had been the middle passenger in the back seat of the car.  She was wearing a lap seat belt (that is a seat belt without the strap that crosses the shoulder and upper chest).  On impact her little body was thrown forward with great force.  The seat belt literally separated her upper and lower body, resulting in permanent damage to her spinal cord.  From then on she was officially or medically know as a T10 Paraplegic.  She lost the function of her body parts below her Thoracic 10 vertebra. She could no longer walk.  She has been in a wheelchair ever since.

Amanda was referred to Heartwell by the Transport Accident Commission (TAC).  On the day I met her she was a tiny thing in a big chair.  She looked small and weak and didn’t appear to have the attitude that many 13 year olds can carry.  She had great big brown eyes that regarded us warily.  She was clearly thinking “what’s in store for me now and what am I doing here?” Along with “here we go again, another appointment my mother has dragged me to”.  To this day I believe it was our two Boxer dogs she spied outside the gym window, that really won her over.  Neither of us knew then that we would spend the next sixteen years as firm friends.

TAC originally sent Amanda to us for two main reasons.  She needed to increase her upper body strength so could more easily make all her daily transfers.  That is wheelchair to car to wheelchair, wheelchair to bed to wheelchair, wheelchair to commode to wheelchair , etc.  Secondly, prior to her accident, Amanda was a competitive swimmer.  She wanted the opportunity to return to swimming for recreational and fitness purposes.  And so began a regime that would inspire any athlete.  Three sessions a week of steadfast determination.

Twice a week we would work out in the gym, pushing weights and grinding the arm crank.  She would work hard, as hard as she could.  Progress was slow but she got stronger.  

Once a week we would hit the pool.  She would swim lap after lap for an hour.  She was fearless and determined and always worked to improve.  She appeared to not notice all the stares of the general public as she transfered from her wheelchair to the waterproof pool chair.  She would not look sideways as I quickly as possible wheeled her down the pool ramp into the water, were from the outside at least, her disability would disappear under the water.  I regularly needed to remind myself that she was only 13 years old.  Her composure was, and still is, incredible.

I have many stories to tell of my friend Wheels.  Keep up the fight for good health girlfriend!

All that smiling, not enough sweatin'!

Amanda at 15 years old in a ten kilometre Fun Run.

Supporting Children with a Disability | Sharing Their Stories

Welcome to my first official blog.  This should be fun!  

For the last twenty odd years, I have had the pleasure of working with some amazing individuals who’s lives are not as easy as ours.  

These children have inspired and captivated me with their stories.  They are the reason that my partner Scott and myself created the Heartwell Foundation.  

Of course each child and their story is different. Some are sad, some happy, some angry, some nervous and timid.  Yet through all these, there has consistently been a common thread.  Courage and determination and the overwhelming desire to be “normal” and “just like everyone else”.

Of course everyone knows that it is not really possible for a child with say Cerebral Palsy or Spina Bifida or Prader Willi or Developmental Delay or Aquired Brain Injury or Paraplegia or Autism or Brain Tumors etc etc, to be “just like everyone else”.  

OR IS IT?

The need to be active and for movement is inherent in all of us.  To be physically fit and strong is a wonderful feeling.  To participate in a sport and game playing is lots of fun.  So too for children with disabilities.  Given the right opportunity and support I have watched so many of these children blossom.  Confidence is a wonderful thing.

Join me as I share some of the stories of the children who have walked through our door.