Patrick

Patrick is here now, working out hard in the gym.  He is in Year 9 at school and he is about to turn 15 years old.  This is the our fifth year of knowing Patrick and of him attending the Heartwell Foundation.  Boy, has he come a long way in that time.  In many areas.  He is now an absolute pleasure to work with and a great conversationalist.  I think it would be fair to say that his session time here at Heartwell, is mutually enjoyed.  That has not always been the case!

Patrick has Cerebral Palsy (CP).  CP is an umbrella term encompassing a group of non-progressive, non-contagious conditions that cause physical disability in human development.  Cerebral refers to the cerebrum, which is the affected area of the brain and palsy refers to disorder of movement.  CP is caused by damage to the motor control centers of the developing brain and can occur during pregnancy, during childbirth, or after birth up to about age three.  It is a non-progressive disorder, meaning the brain damage does not worsen.

Patrick has spastic diplegic athetoid CP.  This means his lower extremities are affected more than his upper extremities.  It also means by having athetoid CP he has trouble holding himself in an upright, steady position for sitting or walking.  For Patrick it also means he has significant involuntary movements, especially of his legs.  If Patrick’s legs are not strapped into his wheel chair they will kick out.  His feet will be constantly moving and unable to stabilise his body.  He takes medication to help control this movement and at the moment there is a noticeable difference in the “calmness” of his body.

Back to Patrick’s improvement over the years. 

Today a very different boy than five years ago came Through Our Door for his session.  Patrick has grown into an engaging and motivated young man, driven by (in his words) “limitless opportunities”.  As a 10 year old primary school boy he was not always an obliging happy chappy.  What we were asking him to do was, for him, boring, unnecessary and time wasting.  Skill work was hard, arm cranking was even harder, stretching was no fun.  Heartwell’s goal was to find an activity that Patrick could feel successful doing and allow him to be physically active.  We want him to develop a life long love of activity.  Thank goodness for perseverance (on both fronts).

Patrick now attends two sessions weekly with us.  He is concentrating on a resistance training program to develop his upper body strength and endurance.  He does interval work on the arm crank to further develop his aerobic fitness.  He has started to pop some nice bicep/tricep action which we are all quite admiring of.  The days of stalling and questioning seem far away and we are proud of Patrick’s achievements.  Keep going Patrick - onward and upward.

Too cute.  Patrick in 2007

Patrick today working that arm crank.

Today, working those triceps.

Today, pull down.

Cheese.

Today, I am focused!

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. 



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.