Daniel's Story

DANIEL’S STORY

(written in December 2012)

By Heather Berry

PEOPLE ALWAYS TELL 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 instantly admitted to Westmead Children’s Hospital and was immediately operated on. 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 means 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. 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 gruelling weeks of radiotherapy often leaving him feeling very sick and 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 has kept his positive attitude throughout and never complained. He has shown 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 fulfil 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 with IBM. 

Towards the end of the 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 and balance & co-ordination problems. He found that he loved the 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. He competed in the National Disabled Swimming Championships the following year 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 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 caused his name to be 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.

On top of all this, Daniel also played soccer for Glenhaven Soccer Club in both the winter and the summer competitions.

We have been continually amazed at the opportunities that God has opened up for Daniel in the last 6 years. 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 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 are close to his heart; include promoting the awareness of Canteen, Camp Quality and the Make-a-Wish Foundation. He has also completed his Duke of Edinburgh Award in all three levels of Bronze, Silver and Gold. Having only just completed his Gold last month. 

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, such as, camps, but declined the offer due to time constraints.

Daniel has also been 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 are only 20 Young Ambassadors around Australia, chosen from the hundreds of wish recipients. He has been 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 has done.

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 his first Gold medal at Open Nationals. Since that, he hasn’t looked back. He has broken 20 Australian Underage Records along the way and has won over 90 Gold medals. He currently holds 7 Australian Underage Records in just athletics alone and also now holds Open Australian Records in 400m, 800m and 1500m which are also Oceania Records as well.

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 is 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’, 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.

Added in January 2013 

Daniel has spent the last 6 weeks in hospital. Throughout this time he has remained positive and accepted his diagnosis. The third week was at a rehab hospital 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 into see Dr Teo who said that he was willing to operate. This happened on Christmas Eve. 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. He is currently slowly recovering from Operation No. 5 to insert a shunt to drain away excess fluid on his brain. As always, Daniel’s determination and fighting spirit is surprising and amazing the medical staff. Over the last 2 weeks, he has not been able to talk and is sleepy most of the time due to sedations (and of course lots of major surgeries) and his eyes only open occasionally but he still manages 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 is still managing to inspire people. The nurses and other medical staff are amazed at how well he is coping after all he has been through. He has won many hearts in the ICU. 

It will be a very slow road to recovery but if anyone can do it, Daniel can with God’s help.  

Throughout this whole time over the last six years, Daniel’s achievements have turned into God’s miracles in his life. We are so thankful to God as we look back over this ordeal realising that God has been with us every step of the way. God has turned a devastating event into many blessings for Daniel and the lives that he has touched. We hope that he continues to touch lives and inspire many.

Added in July 2013 

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 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 friends and family at his Celebration Service. 

WE HOPE HIS MEMORY CONTINUES TO INSPIRE MANY.