Kingsley Collins

4 July 2016

 

Australian Baseball Alumni members and followers will recall the generous and uplifting support from the baseball and broader community to assist with the plight of Brooke Kennedy in her battle with a rare and debilitating condition.

 

Spearheaded by Australian Head Coach Jon Deeble and former Major Leaguer Glenn Williams – now High Performance Manager at Baseball Australia – a fund-raising campaign raised a large amount of money to assist with purchase of specialised medical equipment to help treat Brooke Kennedy and others suffering a similar condition.

 

While it has been tough going for Brooke her family – with serious hurdles still to be overcome – we are delighted to report on the positive progress that has been made in recent times. 

 

Brooke Kennedy has suffered from Early Onset Generalised Primary Torsion Dystonia, a rare and degenerative condition that results in sustained muscle contractions producing twisting, repetitive movements and abnormal postures.

 

Still a teenager who previously played and loved baseball, from the age of fourteen Brooke was largely wheelchair-bound, she was unable to attend school, she was racked by painful contractions and weakened from medications required to control her condition.

 

Despite the best efforts of staff at Royal Children’s Hospital in Melbourne, Brooke’s condition required hospitalisation on numerous occasions with life-threatening Dystonic storms, which contort and lock a person’s body into painful states.

 

The condition – as in Brooke’s case – renders sufferers with little or no control of their body for most of the day, as pain accompanies the basic everyday routines that we take for granted.

 

Eating, drinking, walking, speaking, sitting.

 

For Brooke, the only lasting relief came when she was asleep.

 

In response to Brooke’s condition, family friend Jon Deeble in 2012 helped launch a fund-raising campaign to assist with the purchase of specialised equipment – a stereotactic frame – that had been used overseas but not in Australia on a child suffering Dystonia.

 

The generosity of the baseball and broader sporting community assisted in the purchase of this equipment, which enables a surgical procedure known as Deep Brain Stimulation.

 

While the fund-raising target was comfortably met and Melbourne Royal Children’s Hospital was able to procure the specialised equipment, Brooke suffered a series of medical setbacks that rendered her unfit for the delicate operation until late 2014.

 

The initial procedure was deemed a success, prompting Jon Deeble at the time to make this observation after speaking to the family.

 

“A week after the operation the doctors were amazed at the progress Brooke was making, and although it will be a long journey they are hoping she will be back on her feet soon.”

 

While it has been an arduous journey punctuated with challenges and setbacks, the determination of Brooke Kennedy and her devoted family remain unabated as she deals with the condition in typically upbeat and positive manner.

 

“She is still continuing to do really well,” Sue Kennedy said this week, “and she has now been asked to be a patient advocate by Medtronic - who make her Deep Brain Stimulation system.”

 

The global health leader in medical technology, Medtronic has acknowledged Brooke Kennedy as a great example of what emerging surgical methods – such as Deep Brain Stimulation – can achieve for young people enduring this condition.

 

“She is very excited about knowing that,” Sue Kennedy said.

 

“There are so many things that we are now finding we are able to enjoy with Brooke. It sounds funny, but the most important thing that we realized she had not done for a very long time was to laugh.”

 

“It is so good now to hear her laughing on a daily basis,” Sue said. “The first time she laughed out loud we all just stopped doing what we were doing, as we all suddenly realized we had not heard her do that for a very long time.”

 

“It tells us her confidence is building again.”

 

Sometimes, in life, the little things mean so much. Although the Kennedy family remains well aware of the ongoing challenges that will need to be addressed, there are increasingly more good and positive developments along the way.

 

“It is a very long road back for her, but I admire her persistence and perseverance,” Sue Kennedy said.  “She does have to have major surgery soon to correct a severe scoliosis of her back that has prevented her from being able to stand and walk independently. And she may need tendon lengthening in her feet - but her surgeons hope that this will then give her the foundation to move on with her life without any further surgery.” 

 

“She is, though, learning to stand and step for herself and now is able to do all her own transfers from her wheelchair and she no longer needs to be hoisted. She was able to go back to school full time from the middle of 2015 and she has been very fortunate that her school supported us to give her additional time at school.”

 

“She should have graduated last year, but they recognized that Brooke had missed most of her secondary school experience and they wanted her to be able to enjoy this like her peers did.”

 

“There are so many little things – things that we take for granted – that Brooke is learning to do now,” Sue Kennedy said. “She is learning to speak a little again, she is able to eat normally again without the fear of choking and now that she isn’t having to spend all her time just controlling an out of control body, she has time to learn to read again as well as being much more independent and able to do the things we tend to take for granted such as brushing her teeth - just as an example.”

 

The Kennedy family is of the firm belief that Deep Brain Stimulation has helped improve Brooke’s capacity to read and to write, something of potentially enormous benefit to other persons receiving this relatively new and radical treatment.

 

“So much of the effect of Deep Brain Stimulation remains unknown,” Sue Kennedy said. “Brooke’s wonderful neurology team at the Royal Childrens is watching her with keen interest, as they can also learn from her and her response to the treatment.” 

 

“We still have a bit to go with the treatment. Like the condition itself there is a cumulative effect. In Brooke’s case we have seen continued improvement over the past three to four years.”

 

"Even today, I admit after four years in a wheelchair I had started to think maybe it wouldn't happen. Today, though, that changed and she managed to walk independently in her walker for five metres!" Sue Kennedy said.

 

"For her that is a massive achievement. She and her physio had been trying for the past few months but it just didn't seem to be happening. Yet today she showed me it is all still there. The smile after she achieved this was a mile wide, so it looks like she will prove me wrong, and the doctors are right. It will take time but who knows where this will take us with her."

 

"We still have lots to achieve, but there is great hope and reason for encouragement."

 

Australian Baseball Alumni thanks Sue Kennedy for assisting us with this update on Brooke's progress. We wish Brooke and her family all of our very best for continued improvement and more and more good times well into the future.