CEREBRAL PALSY SPORTING AND RECREATION ASSOCIATION NSW INC
CPSARA aims to provide both sporting and recreational opportunities for people of all ages with Cerebral Palsy and other neurological conditions.
There are many sports, events and levels of competition for you as an athlete to pursue. Participation in sport can be just for fun and fitness but can also be pursued to International and Paralympic level!
Daniel’s Story (15/3/91 – 8/7/13)
By Heather Berry
Daniel joined CPSARA in 2008 after competing at a State Swimming Carnival, where one of the competitor’s parents told us about the organisation. At the AGM, the following year, Daniel’s father, Brian, was voted in as Vice President and soon after, became President, a role which he has remained in ever since. As Daniel’s mother, I have always helped behind the scenes with CPSARA but have now joined the committee as well.
Daniel was an athlete who seized every opportunity that was put in front of him and embraced each day with great strength, courage, wisdom, endurance and determination. He was a role model both on and off the field, always encouraging other athletes, and supporting and mentoring those around him. He had a loving nature and was very generous but still had a competitive drive and an unshakeable fighting spirit. He never complained or gave up and gave his all to the best of his ability. He enjoyed life and always had time for others, continually inspiring them to be better versions of themselves.
He always participated with enthusiasm and excellent sportsmanship. He had a humble attitude and was inspirational in the way he lived his life. His passion and commitment to sport and achieving his best reminded us of what true sportsmanship really is.
He was never frightened of a challenge. In fact, his favourite quote was:
“Challenges are what make life interesting, overcoming them is what makes life meaningful.”
People are always telling me what an inspiration my son, Daniel, was to others.
This is his story……..
On the 1st March 2007, two weeks before his sixteenth birthday, Daniel was diagnosed with a brain tumour. He was immediately admitted to Westmead Children’s Hospital and was operated on straight away. Our whole world felt like it had been turned upside down. The support we received, however, from our family, friends and the school community was overwhelming. God used all of these people in a magnificent way.
We waited anxiously as the intense seven-hour operation took place. Unfortunately, the doctors were only able to get 50% of the tumour, since most of it was in Daniel’s brain stem. We learned that if they had tried to get more at the time, they could have risked paralysis. Fortunately, the tumour was found to be benign, however it was a Grade 2, which meant it could become malignant at a later stage. Daniel recovered steadily from the surgery, remaining in hospital for three weeks.
Daniel’s fondest memory during this time was lying in his hospital bed on his 16th birthday with the whole of Year 11 singing ‘Happy Birthday’ to him over the phone.
During his hospital stay, we wanted someone to always be with Daniel. So I took the day shifts while my husband Brian took the night shifts. Daniel's younger brothers, Thomas (14yrs old) & Joshua (11yrs old), fitted into the routine as best as possible. We were overwhelmed with help from family, friends and our church. Meals arrived every day, along with offers to collect the two other boys from school. Most of all, we valued the prayers from everyone. We knew people were praying for Daniel all over the world!
During that year, Daniel had two major brain operations followed by seven grueling weeks of radiotherapy often leaving him feeling very sick and leaving him a staggering 25kg lighter. This was only the start of the long journey to recovery.
The effects of the operation left Daniel with double vision, nausea every day and weakness down his left side. In an attempt to manage the double vision, Daniel needed to wear a patch over one eye for the year. Then, early in 2008, the doctors operated on Daniel’s eyes to see if they could correct the problem. From the moment he opened his eyes after the operation, he was able to see clearly without any double vision. We thank God for this miracle as it restored so much of Daniel’s self confidence.
Recovery was going to be a process and Daniel continued to see a constant stream of specialists throughout the year.
Daniel himself took everything in his stride, he was very accepting. He kept his positive attitude throughout and never complained. He showed great courage, even when losing some of his hair during radiotherapy; still he didn’t let it faze him. Instead, he forgot about being embarrassed and just carried on with life without even bothering to cover his head!
At the time, Daniel was completing Year 11 at Pacific Hills Christian School and managed to continue to fulfill his weekly responsibilities as a Sunday School teacher and Kids Club Leader. During the July school holidays, Daniel volunteered to be a leader at ‘Kids Games’ with our church, Dural Baptist. He also completed the ‘Young Achievers’ program, through school, with IBM.
Towards the end of that year when he was feeling a little better he took up swimming to help with his recovery. He always used to love sport but never excelled at it. We didn’t realise that this was due to the tumour causing weakness in his muscles as welll as balance and co-ordination problems. He found that he loved swimming and this laid the groundwork for new opportunities in disabled swimming.
At the beginning of 2008, Daniel decided to get his classification in disabled swimming to give him a chance to get to the ‘Zone’ swimming carnival. He not only got to ‘Zone’, he made it to ‘State’ and then to ‘Nationals’ in Christian School Swimming, where he received a Gold and Silver medal and was named ‘Runner-up Disabled Champion’. Wow! Who would have thought that this was possible this time the previous year? God is an awesome God!
These results motivated Daniel to take his swimming training seriously, increasing his training to three times a week. He soon qualified for the Bronze Swimming Squad, and soon after, the Silver Swimming Squad, and found himself getting up early for morning swimming and gym sessions! Daniel also competed at club level, each Friday night, and sometimes on the weekends at various carnivals. The following year, he competed in the National Disabled Swimming Championships held in Canberra where he won a Bronze medal.
Following Daniel’s success at swimming, he decided to get his classification in disabled athletics. He not only won each event up to State level but achieved many new records along the way, including the setting of three new State records. At the CIS State carnival, Daniel was named ‘Disabled Champion of the Meet’.
Daniel’s sporting achievements were recognised and resulted in his name being put forward for the NSW Athletics team for the Pacific School Games, an international sporting event for school age children and youth. Subsequently, he was invited onto the team and asked to compete in six events.
This motivated Daniel to start athletics training, so on top of his early morning swimming training, he began to include afternoon athletics training. Daniel spent two afternoons a week concentrating on running training (for track events) and two afternoons focusing on long jump and shot put (field events). He was very dedicated and didn’t miss any of his training sessions. This must have helped, as he achieved five out of six ‘personal bests’ at the Pacific School Games. No medals were won, but we found out later that this was because he was classified wrongly. He would have won 6 out of 6 Gold medals if his classification had been correct. His classification was corrected soon after the completion of these games.
On top of all of this, Daniel also played soccer for Glenhaven Soccer Club in both the winter and the summer competitions, as well as completing his Duke of Edinburgh Awards in canoeing.
We were continually being amazed at the opportunities that God opened up for Daniel after he was diagnosed with his brain tumour. One example of this would be, at the beginning of 2009, when Daniel was asked to join the Development Squad for the National Football team for the Paralympics. So on top of swimming and athletics, he now had to fit in National football training sessions and camps. He had a few decisions to make following this as he was advised that he wouldn’t be able to keep this busy schedule going.
He enjoyed the football and was selected into the National Paralympic Football Team (Pararoos) later that year to travel to The Netherlands to compete in the World Football Championships where he had the pleasure and thrill of scoring his first international goal.
He undertook Year 12 via the Pathways Program at Pacific Hills, which allowed him to complete his HSC studies over an extended time frame. This gave Daniel the opportunity to pursue his passion for swimming, athletics and football, along with other commitments. Following the completion of his HSC, he commenced a degree at ACPE in Sports Coaching and Administration which was also on a part-time basis.
Daniel’s other commitments which were close to his heart, included promoting the awareness of Canteen, Camp Quality and the Make-a-Wish Foundation. He also completed his Duke of Edinburgh Award in all three levels of Bronze, Silver and Gold, having only just completed his Gold before he was hospitalised for the final time.
Daniel helped to promote Canteen during 2008’s National Bandana campaign, featuring in a brochure that was sent with the bandanas to various organisations around Australia. His story also featured in a letter that was received by every organisation that sold the bandanas. Daniel was also in a number of magazine ads and newspaper articles for Canteen. He was also asked to become a leader at Canteen activities including camps, but declined the offer due to time constraints.
Daniel was also the fortunate recipient of a wish from the Make-a-Wish Foundation. He was so grateful to receive his wish that he offered to help promote the organisation. He was asked to be guest of honour at a trivia fundraising night where he spoke to the audience about the wish that he was granted. As a result, he was asked to be a ‘Young Ambassador’ for Make-a-Wish. It was a great honour for him as there were only 20 Young Ambassadors around Australia, chosen from the hundreds of wish recipients. He was also a guest speaker at many fund-raising events held by companies such as P&O, Franklins, Sass & Bide and 2evolve.
This was Daniel’s wish. “When I found out about Make-A-Wish, I knew straight away what I would ask for. I am a keen football fan and follow Liverpool F.C. My wish was to go to England to see Liverpool play football at their home ground, Anfield. My wish was granted and I will never forget the feeling of sitting in the stadium, watching the game and just listening to the crowd roaring. It was a truly amazing experience. A trip of a lifetime, made even more special by sharing it with my family.”
In September 2008, Daniel was nominated by Pacific Hills for the ‘Excellence in Youth Awards’ with Hills Shire Council. He was put forward for the category of ‘Dynamic Achievement’ and we were very proud of him when he won this award.
Always humble, Daniel was open and honest in his acceptance speech for this award. He said “When I was diagnosed with the brain tumour, I didn’t know what the future would hold and so I decided to make the most of every opportunity that was put in front of me. God has given me a recently discovered talent for swimming and athletics, even though I have weakness down my left side. I have become very focused and motivated with my sport.
My aim is to now try and do my best at sport to show other people that you can still achieve things even with a disability. In doing this, I hope to encourage other young people with disabilities to get out there and give things a go. I want to make them aware of what’s available to them.
Basically now, I am readjusting my life, coming to terms with my diagnosis, and dealing with whatever life throws me. I try to think positively, try not to be bitter about what’s happened but instead thank God for every opportunity he has given me since my tumour was diagnosed. Each day is a gift. I hope I can inspire others not to give up and to show them that anything is possible if you set your mind to it.”
This is exactly what Daniel did.
He went on to win another ‘Excellence in Youth Award’ the following year in the category of ‘Challenge and Change’ and was awarded ‘Young Australian of the Year’ for 2010 in the 2011 Local Council Australia Day Awards.
Daniel’s athletics career took off in 2010 where he won a Gold medal at National All Schools Cross Country and his first Gold medal at Open Nationals. After that, he didn’t look back. He broke 20 Australian Underage Records along the way and won over 90 Gold medals. At the time of his death, he held 7 Australian Underage Records in just athletics alone and also held Open Australian Records in 400m, 800m and 1500m which were also Oceania Records.
Towards the end of 2010, he got selected on the team to represent Australia at the World Athletics Championships in Christchurch, New Zealand in January 2011. As a result of his achievements there (including breaking his first Open Australian Record), he was named in the Paralympic Shadow Squad with the hope of representing Australia at the London Paralympic Games.
Unfortunately, Daniel broke his collar bone at the beginning of 2012 which put a dent in his training schedule, but to his credit, due to his determination and drive, he made up for this and still qualified for the Paralympics, but narrowly missed out on selection. He was actually informed that he was the next athlete to go if a spot opened up.
Since he didn’t end up going to the Paralympics, he chose to enter into the City 2 Surf as part of the Make-a-Wish team to help raise much needed funds for Make-a-Wish. He was not one to sit around and waste opportunities.
As a result of not being selected in the Paralympic team, Daniel was able to enjoy a relaxing 6 week holiday overseas with his family and some friends. The memories of which we are cherishing and holding onto now.
Unfortunately, it was towards the end of this fantastic holiday that it became apparent that Daniel’s tumour had started to grow again, and this time with a vengeance. Over the next two months, we saw Daniel deteriorating at a very fast rate. So much so that, within 6 weeks, he needed a wheelchair if we needed to go out anywhere.
This didn’t stop him from participating in the ‘Beach Walk for Brain Cancer’, to raise money for ‘Cure for Life’, now known as ‘Cure Brain Cancer’, where he was pushed along in a wheelchair by his family and friends. His determination showed through once again, when we got to a beach section where we couldn’t push the wheelchair. Instead of going around through the carpark, which could have been an option, Daniel insisted on completing the ‘walk’ along the same route as everybody else. With a person on either side of him he struggled but managed to walk through the sand like everyone else, showing us the meaning of his favourite quote, “Challenges are what make life interesting, overcoming them is what makes life meaningful” - Joshua J Marine.
Two weeks later he was admitted to hospital where the doctors said that there was nothing more they could do for him except to make him comfortable and manage any pain. Daniel still remained positive and accepted his diagnosis. He was moved to a rehab hospital after two weeks, where he was very dedicated with his physio sessions in the gym. Many of the ‘older’ patients admired Daniel for his determination and drive during these sessions. Two patients, in particular, came up to me on separate occasions and said what an inspiration he was and that he had inspired them to try harder with their rehabilitation.
During his hospital stay, we got him in to see Dr Charlie Teo, who said that he was willing to operate. This happened on Christmas Eve, 2012. The tumour was so big that it caused lots of swelling and as a result, Daniel had to remain on a ventilator.
Due to complications, Daniel had to have two more brain surgeries and a tracheostomy performed. A fifth operation was needed to insert a shunt to drain away excess fluid on his brain. As always, Daniel’s determination and fighting spirit continued to surprise and amaze the medical staff. He was not able to talk and was sleepy most of the time due to sedations (and of course lots of major surgeries), and his eyes only opened occasionally, but he still managed to be half awake sometimes to get his message across to us about pain, etc.
Even during this time, while being on the ventilator and barely conscious, he was still managing to inspire people. The nurses and other medical staff were amazed at how well he was coping after all he had been through. He won many hearts in the ICU.
It was a very slow road to recovery but we felt that if anyone could do it, Daniel could (with God’s help).
Daniel remained in ICU at Prince of Wales Private Hospital for 5 weeks before moving up to the ward for just over 4 weeks. From there he moved to Westmead Brain Injury Rehabilitation Unit where he continued to inspire the nursing and auxiliary staff with his positive attitude. He continued to win many hearts.
We spent many enjoyable hours playing games with him which he quite often won. He even managed to teach his auntie and uncle a new game that they hadn’t played before which was amazing considering that he couldn’t talk due to his tracheostomy.
In April, 2013, we got the news that his tumour had started to grow again at a fast rate but this didn’t stop Daniel from giving his physio sessions 110%. He was not one to give up!
In June, he received his Gold Duke of Edinburgh Award from the Governor of NSW, Marie Bashir. This took a massive amount of organising leading up to the day and then lots of effort on the day but it was well worth it.
Two weeks later, Daniel was allowed to come home where we enjoyed his company for just over two weeks before he passed away on the 8th July, 2013 surrounded by his family.
We are continually being amazed and overwhelmed by the impact that Daniel has made on everyone. We received messages of sympathy from around the world and Media Releases were being done within hours of the news of his passing. We were honoured with the presence of nearly 1000 family and friends at his Celebration Service.
Throughout his whole illness, (over six years), Daniel’s achievements were turned into God’s miracles in his life. We are so thankful to God as we look back over this ordeal, realising that God was with us every step of the way. God turned a devastating event into many blessings for Daniel and the many lives that he has touched. We hope that his memory continues to touch lives and inspire many.
Just after he passed away, we were approached by six different places that Daniel was associated with, for us to give permission to hand out a perpetual trophy in his memory. We are invited to each of these award ceremonies each year and have the privilege to present the trophy to the chosen recipient(s).
The places where we hand out awards are:- his university, ACPE, (Daniel Berry Exceptional Student Service Award), his school, Pacific Hills Christian School, (Daniel Berry para-athlete of the year), his Athletics Club, Cherrybrook, (Daniel Berry Seniors Award), his Athletics Group, Team Zip with Matt & Ron Rawlings, (Daniel Berry Memorial Award), CPSARA (Daniel Berry Inspirational Award) and our local Futsal Club, Dural Warriors, (Daniel Berry Memorial Award). There was even an annual weekend Futsal competition named after him, The Daniel Berry Cup (formerly known as the Norwest Cup).
It has been a great honour to hand out these awards as it reminds us, on each occasion, the impact that Daniel had on so many people. We hand them out to honour Daniel and everything he stood for in his life and in particular in his sporting career.
Years later, we are still being reminded of this impact. Daniel’s university has just awarded him a Posthumous Honorary Bachelor of Sports Coaching and Administration degree which we had the pleasure of receiving at their graduation ceremony. The first time that they have done this in their over 100 year history.