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.