Jason is a Trooper.

Jason works hard in every session.  He always does his best, tries as hard as he can.  Jason is 9 years old and he has been coming to Heartwell since October last year.  He is a real trooper and great to work with.  He was referred to us by the Victorian Paediatric Rehabilitation Service (VPRS) at Monash Medical Centre.

Jason was diagnosed with a medulloblastoma at the age of 20 months.  Medulloblastoma is a highly malignant primary brain tumor that originates in the cerebellum or posterior fossa.  He had the tumour resected (surgically removed) and then followed a course of chemotherapy, all before he was 2 years old.

Jason is now in remission.  

He now presents however, with a few problems.  He has 20% vision loss in his left eye.  When we met him 5 months ago he had just had his plaster removed and was recovering from a fractured left arm.  One of his personal goals, and that of his physio, was to reduce his constant tripping/falling at school due to his poor balance.  Jason also wanted to feel less tired and fatigued all the time.  He wanted to improve his opportunity to participate in sports and physical education at school.  

There are many things we work on with Jason.  He needs to learn how to hop and skip.  He needs to learn to throw and catch balls, despite his poor vision.  He needs to learn to control his momentum when he is moving and running about.  He needs to learn to track objects as they move towards him.  He needs to learn he can do all these things and lots more now he is being taught.  He needs to improve his confidence.  He needs to learn to believe in his ability and that he can participate and be involved in school sport - so that he will have a go.

In an unbelievable twist to Jason and his parents story of courage and resilience, is the story of Jason’s baby sister, Kelly.  Kelly was 2 years old and two years younger than Jason when she passed away from the same tumour-medullablastoma.  Jason’s parents had two children, both very young, undergoing cancer treatment at the same time.  Apparently the chance of siblings having this same tumour is so rare it’s said to be one in a million.  They are a very courageous family.    

Jason has made good progress and continues to do so.  He is fitter and stronger and we look forward to watching him grow and develop further this year. 

Lets do some change of direction work.

Jason and Scott

Autism Spectrum Disorders

There has been many challenges and many rewards for us working with children with Autism Spectrum Disorders (ASDs). At the Heartwell Foundation many children with this diagnosis have come Through Our Door. ASDs are lifelong developmental disabilities characterised by marked difficulties for children in the following:

Social deficits
Communication difficulties
Stereotyped or repetitive behaviors and interests
Sensory sensitivities
Cognitive delays.

The word ‘spectrum’ is used because the range and severity of the difficulties people with an ASD experience, can vary widely. ASDs include Autistic disorder, Asperger’s disorder and Pervasive Developmental Disorder.

Research shows that about 1 in 110 children have an ASDs and that it is more prevalent in boys than girls. This is the case for the children “on the spectrum” who have come to us for a specialised Physical Education program. Over the years there have been many more boys than girls. There has also been a noticeable increase in the number of children referred to us with a Autism Spectrum Disorder in the last ten years.

The challenge for us at Heartwell is to adapt our programs so that the children with extreme examples of the above characteristics get good outcomes in their sessions. Our sessions by nature are very hands on and can often include a lot of touching and moving and turning of the children as we are teaching skills. This can be NOT fun for those children with high sensory sensitivity. As the teacher, let me tell you, you only need to forget that once and usually you wont need to be reminded again. The child somehow lets you know!

The rigid thinking and communication difficulties can also be a fun challenge. It takes a lot of negioation skills, patience and sheer cunning to get some of these children to do the things you would like them to attempt. If their mind is made up and they don’t feel confident to have a go, then steely perseverance is required by us. Some kids can get fixated on the one activity or thing they like most. That was the case with Andrew, for whenever he came for a session he would demand to play Basketball. We had done a bit of Basketball with him and he felt confident with the skills. Whenever we tried to teach him other skills, he would cry and carry on. We had so much more to teach him, but I can assure you in the end a great deal of each of his sessions involved Basketball drills (with a healthy mix of what we really wanted him to do)!

Then there was Steve. When we first assessed him for his program his mother mentioned he had a fixation on washing machines. It did not seem all the relevant to us for our work on his skills and fitness. It did however become relevant very quickly. For whenever Steve arrived he would rush to every door/exit looking for the “washing machine”. We learnt never to put a load on when Steve was due to arrive.

Then there was Neville. He had an amazing memory for dates. His social skills were quite good in a closed and controlled environment. He generally liked to speak to people-especially adults. His number one question was to ask of your birth date. Then he would recall it at every session. And he would tell you when you were born and he would tell you how many more days till your next birthday. And how many days since your last birthday! And how many birthdays you have had! Luckily he couldn’t tell you when your very last birthday would be (not at least, at the time of writing). He was quite amazing and a lots of fun.

We are so fortunate to have worked with these special kids.

Absent Friends

Sadly we have had some very sick children participating in Heartwell Foundation programs over the years.  These are children with tumours and cancers.  These children when they are referred to us, turn up our at door looking pale and fragile and unwell.  Often these children have had previous treatments of any combination of surgery, chemotherapy and radiotherapy.  They are coming to us to regain some strength and condition.  In some cases the children may have missed prolonged periods of school and have big gaps in their motor skill development.  In some cases they just need some activity which is fun to help get them back into the swing of things!

For us and I’m sure for these children’s families also, their child participating in a specialised Physical Education program is seen as a very positive step forward towards good health.  We at Heartwell tend not to think that anything bad could happen. 

For most of the children that is the case and their health builds on an upward curve.  

Sadly however there have been occasions where this has not happened, and some of the beautiful little children we are working with, have passed away.  It is difficult to articulate how distressing this is for us at Heartwell.  Usually with most of the children who come Through our Door we form a tight or special connection.  This is reasonable when you consider that we usually work with a child in a one on one situation during a couple of sessions per week.  In that time we often get to know the children quite well, we become friends.  We get to know their families.  Close relationships are forged. 

None more so then when we know that how sick a child with cancer has been.  The need to protect and help is very strong.  Respect is really all you can feel as you watch that child try as hard as they can to complete tasks.  The happiness as you observe improvements in skills or activity tolerance.  Then the absolute shock and disbelief when you are told the heartbreaking news that the cancer is back.  The sudden switch in our Heartwell program focus from teaching/developing to now having fun and playing.

There is nothing sadder than attending a child’s funeral.

I thank all the Heartwell families over the years who have allowed us to work with their children.  I am especially respectful to the families who allow us to spend such precious minutes with their child as they battle such illness.  To those who have passed away, thank you for the privilege of getting to know you and for ever becoming a friend of Heartwell and Scott and myself.

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

We Lend Our Heart to Your Stories

Do you have a child with a disability? A sister or brother who needs help developing their fitness and skills? A friend with special needs? 

Come and join the community.  

The Heartwell Foundations works with children with varying levels of need every day! We provide specialised physical education programs for every individual child and help them learn, in a fun way, in a safe place!

So, join our blog, stay updated on our most recent posts, and above all, come and join the family. 

Here at Heartwell, we are all heart!