Life is filled with twists and turns, just when you think your life is on track and you are feeling healthy, happy and at peace with yourself, you are suddenly confronted with the unthinkable...your child is diagnosed with a life threatening, insidious disease.
You must wonder, “why my child?” You are the parent and you feel responsible for your child’s well being. You must wonder if this is really happening to your family or is it just all a big horrendous mistake.
You think you can normally handle anything life throws at you, but when faced with this devastating revelation, it must feel like you’ve been hit with a ton of bricks.
The situation is out of your control and you feel vulnerable and utterly powerless.
Sadly, this is the reality for the Bragg family.
Daniel Bragg was unbelievably diagnosed with kidney disease and ultimately needed a transplant to survive.
His touching, story of courage, determination and strength of character was relayed to me by a mutual friend and work colleague of Daniel’s father, Matthew.
My friend told me about a wonderful thank you note that the company had received from Matthew during his recovery, after donating a life saving kidney to his son.
This is a brief extract from Matthew’s thank you note addressed to his work colleagues.
“A beautiful bunch of flowers arrived at my door last night and they have taken pride of place in the most frequented room in the Bragg household, the kitchen/dining room. My wife and little ones were very excited by them and I am very proud of them when I tell people who they are from – my friends at Action Workforce! Thank you very, very much, team.
Overall, I feel incredibly privileged to have been able to do this for my Son. I think it's one thing to be an organ donor on your driver's licence. It's quite another thing to be able to be a living organ donor and actually see and live with the benefits of donation; what an honour for me. Looking at Daniel now, and his excellent progression, it just feels that my 'selection' was just meant to be, wasn't it?”
As you are probably now feeling, I too, was consumed with incredible compassion for Daniel, Matthew and their family, however, I also felt inspired by Matthew’s extraordinary, positive attitude and generous heart.
I wanted to learn more about the Bragg Family, I had so many questions to ask, hence, I contacted Matthew and he kindly agreed to share Daniel’s remarkable journey with us.
This is a ‘must read’ story that will lift your spirits and restore or heighten your faith in humanity.
WARNING: Keep a box of tissues handy as this is an emotional interview.
Lana: Hi Matt, firstly, thank you for kindly agreeing to share your family’s experience with us. I can only imagine how difficult life has been for the whole Bragg Family. You are all truly inspirational.
Lana Matt; to begin the interview; tell me, how old is Daniel now and what medical condition caused him to become so ill that he required a transplant and how long had he been ill?
Matt: Daniel is now 16. In March 2007, his illness began. He was 14 at the time. Initially we were unsure as to what the problem was. Over the period of a week, we noticed that he would get up each morning and look a little puffy around his eyes. When we asked how he was feeling he would simply say that he was feeling a little tired, but otherwise, "Fine, Dad". His appetite was also slightly off and his normal breakfast intake wasn't the same. That said, when he returned each afternoon, he would again say that he was fine and feeling no ill affects. The puffiness continued for a couple of days and we took him to our local doctor. Nothing abnormal so far. We put it down to his training regime. Daniel trains and plays football 6 days a week. He has always been incredibly fit and athletic and until this illness had never suffered anything more than the odd cold and flu. Again, the puffiness continued, however, there were also now some additional emerging symptoms - headaches, increasing tiredness and a much reduced appetite. We immediately returned to our doctor, this time insisting that Daniel undertake a blood test. He was still feeling ok, so his routine of school, playing and training continued without any problems. Not until a few days later...
The blood test results returned and we received a call from our local GP. "There is an abnormality", she started. "Daniel's creatinine level is abnormally high and I suggest you see a specialist paediatrician". Miraculously, we were able to secure an appointment the following day. Again, another blood test was undertaken, as was an ultrasound of his kidneys. The ultrasound returned no obvious issues, however, the bloods confirmed the earlier result - Daniel has a kidney illness. The extent of his illness was still unknown.
It was a Saturday night and I was working and not contactable. Daniel, his brothers and sisters were at home with Mum. I was working a second job at the time and I was not able to be contacted. My wife received a call from the paediatrician. It was serious. "How's Daniel?", the doctor enquired. "Funny you should call, doctor", replied my wife. "He's in the bathroom, having started to suddenly vomit uncontrollably". "I'm not surprised", said the doctor. "Daniel has a severe kidney illness and is presenting symptoms of renal failure. Please deliver him immediately to Westmead Children's Hospital - the Emergency Department is waiting for you".
It wasn't until about 11pm that night that I was able to finish work. I switched my mobile phone on. Missed call after missed call - all from my wife. Voice message after voice message and finally a text message - At Westmead Children's Hospital. Daniel very ill. Asking for you. Please come as soon as you can - we need you. Love you. I went cold. I rushed to the hospital and in I rushed, to something I will never forget. My boy was limp, lifeless and whiter than white. He was slipping in and out of consciousness and there was very, very real concern for him. Doctors, nurses, medications, tubes and bags everywhere. I will never forget it. His Mum was holding it together and I had to do everything within me not to burst into tears. He was stabilised, admitted and I spent the following week alongside him in an isolation ward. I never left his side and kept fastidious notes in an exercise book throughout. It was my only way of remembering and recalling vital details to the number of doctors and specialists who visited him. He underwent a biopsy and the results indicated a problem with the filters in each of his kidneys. He was prescribed a massive amount of steroids and any number of other medications. He was hospitalised for 2 weeks and discharged. His medication continued, as did the regime of hospital visits and medications. He was not a well boy and despite the unbelievable efforts of the renal specialists at CHW, his body simply did not respond to any of the medications. The frustrating thing for all of us was the fact the virus was not identifiable and never has been. It’s one thing to fight a disease, quite another not knowing what the enemy is.
Daniel's condition was tabled with doctors around the world. Although his situation improved significantly, he never really fully overcame illness. It sat there, defiant, and no amount of any new medication in the world enabled Daniel to rid himself of it. The wonderful thing is, however, many of these new medications did indeed help many, many kids, here and around the world. But not my Daniel. His kidney disease was defined as Focal Segmental Glomerulosclerosis. His doctors remained hopeful that a new medication, which he would respond to, would be found. As a parent, you do anything for your kids when they are ill, so I suggested to doctors that although they were doing everything in the world for him, was there a chance that I could travel to anywhere in the world to find a specialist cure? I was assured that treatment for Daniel was best undertaken here, in Australia.
By June of that year, Daniel had resumed his training and playing of sports. Doctors gave him the green light and encouraged him to resume his sport. He fought his way through injury and a lack of fitness to complete the playing season. It was a personal triumph. He was feeling good. He was far from on an industrial strength dosage of medications, rather a more stabilising dose. His blood measurables were stable. All good. Until May 2008...
Daniel's blood levels had skyrocketed overnight. His kidney disease had accelerated at a very aggressive rate and was showing no sign of abating. By June, he was back in hospital, where he underwent an immediate operation to have blood dialysis tubing inserted throughout his body. His kidneys were failing him and he was entering a stage of complete renal failure. Understandably, he was devastated. He initially refused to accept the dialysis machine and his predicament. It was his way of coping. "I'll be back, Dad", he would always say to me, winking. His sport means the absolute world to him. His coaches, club and his teammates are everything. When you're 15 and your body has been through what his endured, I can understand that.
His kidneys might have blown the full time whistle, but my beautiful boy never did. Despite a fluid restriction of 200ml per day, 3 x 5hr dialysis treatments every week, food restrictions and the myriad of tests, consultations and interruptions to his life, he remained as positive as anyone I have ever seen. I cannot express how proud of him I am. He truly became my inspiration. I couldn’t believe his positivity and bravery.
Overall, from initial illness to dialysis, it was a period of just 15 months. In terms of how Daniel contracted the disease, that was the most frustrating issue of all. We didn't know then and we still don't. He seemingly contracted a virus. This virus could have been a common cold or flu. 99% of that virus left his body, however 1% remained in his body and manifested itself in his kidneys. There it found a home and began the process of diseasing his kidneys. Despite the unbelievable efforts of his doctors, no amount of medications would rid the virus from his system. As someone who has always played, trained and competed at a high level in his sport, it was gut wrenching for him.
Lana: I can understand how grieved Daniel must have felt, not only contracting kidney disease, but the affect it had on his young life and not being able to pursue his love of playing football. What other affects has Daniel’s illness had on his life and your family’s life?
Matt: The affects on Daniel and the family were significant. We are a very close and loving family unit. That said, my wife and I have remained firm in that Daniel's sister and brothers and indeed Daniel would continue life as normally as we could possibly manage. To this end, they have continued with their schooling and activities without impact. Even on the day of the transplant, they went to school. I went for my usual run in the morning at 05:30, showered, kissed my wife and the kids goodbye and drove myself to the hospital. I just wanted it to be normal, for all of us. I parked the car and went immediately to my Daniel. I kissed him, hugged him and explained that part of me would see him in about 6hrs and the rest of me would see him the following day. It was my way of coping, of getting through this. I didn't want to traumatise the little ones. I don't think they or me would have coped with being wheeled away to theatre in a flood of tears. They knew Daddy was having an operation, but equally we downplayed it as a minor procedure. The teachers later reported that the kids were absolutely fine and said it was the best thing we could ever have done. They were so proud of their big brother and their big Daddy and told the whole school!
In terms of the impacts on Daniel, there have been plenty. He retains his ambition of playing at the highest level of his sport and I wouldn't count against him. He is a remarkable lad. Yes, I'm biased, but any number of his coaches will tell you that. He's had to endure the physical pain and the injuries. But as you would expect, he's had to endure a lifetime of frustration and fear. There were times when I would ask him to just let it out and have a good cry. But he rarely did. This concerned me, so I was always conscious of opening him to the world, to allowing anyone who wanted to see him, the time and place to do so. I was very concerned for his mental wellbeing. Maybe that's me just being a Dad, but there were times in the middle of the night when I would go to his room and check on him. "I'm fine, Dad", he would startle me. We'd both laugh. "Get to bed, Dad"! He is a very strong and capable young man.
I've always been concerned for my Senena. My beautiful wife lost her brother and mother within a few months of each other in 2006. My wife has been a real strength; an absolute rock. My respect and admiration for her is beyond belief. I had the easy job - I would go to work each day. My wife, however, was the driving force. She would transport Daniel to every consultation. We're pretty much on our own, so she also had to juggle the other three kids of to school and everywhere else. It was tough. Real tough. But she was as tough as our Daniel. I've never heard one word of anger from her. Together we've cried a thousand times, but she would always turn to me, look me straight in the eye and say, "Whatever it takes". She is my life, she is my wife.
Routines, planned trips, getaways, everything - a chronic illness puts your life on hold. There was never any anger, just frustration in trying to overcome it and see Daniel back doing what a 15 year old should be doing. Plans become superfluous. There's no plan beyond doing whatever it takes to beat the illness. "We'll get to the other stuff later", we'd always say.
Lana: Senena is obviously an incredible woman and as you said, she is your rock and I am sure that you are her rock too. I cannot even fathom the devastation you both must have felt when you discovered that Daniel’s survival depended on a transplant.
Matt: When we discovered that Daniel required a transplant, it came as a shock. I had already begun preparing myself, but to be told a transplant was needed, it really hit home. As the blood test results deteriorated and the doctors became increasingly desperate to find a 'silver bullet' cure, I had resolved that if there was to be a transplant, I was first in line. No ifs, no buts. When your child needs you in this way, it is special. I felt privileged. It was an honour for me to be able to do this for my Son, and I wanted to be the first to undertake all of the compatibility tests. My wife and I were both concerned, but overriding this was our Son's future. There was no decision to make. Whatever the risks, whatever the consequences...whatever it takes.
Lana: Matt, when did you decide to be tested for compatibility to become a donor and what was the procedure?
Matt: When Daniel began dialysis in June, the testing for compatibility moved pretty quickly. We were advised that a live donor operation would work best and besides, the wait list for organ donation remains unacceptably long. As he commenced his first dialysis session, my wife and I began the process. It began with an initial blood and tissue sampling, where a 'cross-match', is conducted. This entails a substantial amount of blood to be taken and tested. This is the first box to be ticked and often the biggest hurdles in terms of compatibility. The results came back within 24hrs - both Mum & Dad were compatible. From here, it was a discussion between Mum & Dad as to which one of us would go the next step. The doctors also indicated that my results were a little different than those between my wife and Daniel. This was a good thing, the doctors explained, as it meant that if the virus were to return to Daniel post op, my kidney would be such that it would be more likely to stave off infection and the disease recurring. I was ready, willing and determined to be the one. We agreed it would be me. Great news; I was elated. Bring on the next tests.
In early July, I undertook a battery of tests over two days at Westmead Hospital - cardiac function, kidney function, liver function, blood tests - the works. I felt a little radioactive after it all, but again, I was on a high. My boy was going to be well again and I could think of nothing else. The tests came back - pass, pass, pass. Flying colours on every function. I was the perfect donor in every sense and in every measure. Moreover I had never undergone surgery, my weight was ideal, I run every day and I eat all the right foods. It was meant to be. I then met a plethora of doctors and surgeons, who patiently answered my every question. My surgeon, Dr Pleass, was a legend. A date was set - 18 August. Wahoo! Everything was falling into place. The look on Daniel's face said it all - he could sense he would soon have his life back.
A week out from the operation, things were put on hold. Daniel's doctors had discovered a drug which had received very positive results in the laboratory. Only trialled on mice, they told me, but it's curing kids around the world. We were told the drug would be priority for Daniel. Maybe the operation wasn't going to be required after all? Queue the 'emotional rollercoaster' again. I jumped in, held on and off we ventured. Up, down and around we go - again. After further consultation it was realised that the medication had worked successfully on those kids who had not yet commenced dialysis. My boy was 3 months too late. We were crushed. 12 weeks too late and we've been on this nightmare ride for more than 12 months. Can you believe it? Off the rollercoaster and back to reality and back to whatever it takes. We dusted ourselves off and got back on the path of positivity, where we felt more in control. Queue the operation - 18 September. Bring it on.
Lana: The emotional roller coaster must have felt like it was careering off the tracks and then to contend with an operation of this magnitude, I can only imagine how incredibly difficult and painful and scary it must have been for Daniel.
Matt: Yes, Lana, the operation for Daniel was indeed major. I think probably the worst thing is the wait. My operation began at about 0830 and he would need to wait for my kidney to be extracted and delivered. He would begin his procedure at about 1300. The kidneys he was born with remain in his body, dormant and shrunken. To remove them would be unnecessary, we were advised. My kidney was therefore inserted into Daniel roughly where his small intestines are located. He endured much pain, but funnily enough, his recovery was rather more dramatic than mine. The power of youth - I love it. He remained in intensive care for 3 days and was then shifted to an isolation ward. He remained in hospital for 10 days. Daniel's response to his new kidney was incredible. Blood tests indicated a very dramatic improvement and he was weeing again! He hadn't passed urine virtually since he began the dialysis in June. It was very exciting. Funny what we take for granted, eh? He remains on a daily dose of medication to aide his recovery and stave off rejection. There's been one or two bumps along the way since the op, however, so far so good. Two months later and he has resumed his training regime. He looks great and feels fantastic. You can't begin to believe what this means to me; to have my Son smiling and again living life to its absolute fullest. And it's the little things which bring a smile to his mum and I - his beautiful hair thickening up again, his hairy legs returning and his chest beginning to fill out like a young man. I can't stop looking at him and I love seeing him doing what he loves to do. Daniel has tapered to a visit to the hospital once every fortnight - a good sign that things are working as they should. Daniel's surgeon was Dr Shun - you may have seen him recently on Royal Prince Alfred Hospital (a television reality show), performing a liver transplant on little 2yo girl. A remarkable man. And the staff at the Children’s Hospital Westmead are an incredible team. I am in awe of these people.
Lana: Matt, I’m never going to take ‘having a wee’ for granted ever again!
Thankfully Daniel’s transplant was a huge successful, what is the average success rate for kidney transplants?
Matt: As research and medications have improved, so too has the success rate. Quite often the compatibility rate dictates expected success. With Daniel & I, we are a 98% expected success. The higher the compatibility, the higher the success. That said, the human body is an intricate machine - things can and do go wrong. Daniel has been given the gift of life and he takes this very seriously. He is inflexibly focussed on ensuring all doctors instructions are followed to the letter. The kidney is an amazing organ. Someone can lose a very significant percentage of its function before they know they have a problem. Think about that...if you were to lose even a slight portion of your heart function you would immediately know you had a problem. It's why kidney disease is often referred to as the silent killer. We know more about the heart than we do the kidney. New cells in the kidney are being identified every day. Amazing.
Lana: I never thought of kidney disease in that way and I can now understand why it is referred to as “the silent killer”.
Matt, I can imagine that your operation to remove a kidney was no ‘walk in the park either’... what was involved?
Matt: My operation involved the laparoscopic (keyhole) removal of my left kidney. It took about 4hrs. My kidney was removed via a small incision below my navel, just on my pelvic bone. There are 4 small scars on my chest where the various veins connecting the kidney were severed. I woke up to see my wife. It was great to see her. My surgery was on a Thursday and I was discharged 36hrs later, on Saturday. I walked over to the Children's Hospital and kissed and hugged my Son. It was very emotional. 4 days after surgery I was walking two hours a day and after 3 weeks I was back running again. I feel perfect and aside from the scars (which I proudly show off), no-one would know I've ever had surgery. Healed.
Lana: Being confronted with such a life changing experience, is obviously earth shattering for you and your family, and undoubtedly impacted greatly on the lives of everyone around you. How did you all cope and what got you all through?
Matt: Very difficult indeed. The person I felt for most however, was always my wife. One can only imagine what she endured on that surgery day, with her husband and eldest child each undergoing a major procedure. She must have covered a thousand emotions (and kilometres!) that day, as she moved between the children's and adults hospitals. She is a remarkable woman and I am incredibly proud of her. We are a very close and loving family and our love for each other got us through. That, and a very solid communication process, both within our family and with all of our treating physicians. We're a family that has always been very positive and we have little patience for doomsayers and negative self talk. We're too busy living.
Lana: Your wife is exceptional, to even contemplate the emotions that she had to endure travelling back and forth from your bedside and Daniel’s is incomprehensible, it’s certainly times like these when you need family and friends to support you. It’s often the case, that family and friends do want to offer you their help and support in any way they can, but are unsure about what they can actually do. What can they do to help out?
Matt: For family and friends, the best thing for us was to know they were there when we needed them. We loved them calling us and sending us text messages. My advice to anyone in this situation is to offer your help and be there when you're called upon. Your expression of love and support are what matters most.
Lana: Matt, did the inevitable absenteeism from work cause any problems with your employer?
Matt: I started my job at Action Workforce in May this year. A month later and Daniel's health had deteriorated dramatically. Not the sort of thing I wanted to go to my new employer with. Not that I expected them to be unsympathetic, but equally I looked at things from their perspective. They are running a professional company and can ill afford this. I needn't have worried. Ross Shrimpton and the staff have been wonderful throughout and my family and I thank them enormously. I feel very fortunate to work within such a company culture. I returned to work a fortnight after my operation and couldn't wait to see the team.
Lana: It’s so refreshing to hear that there are companies out there like Action Workforce that still care for their employees!
Matthew, the operations that you and Daniel endured, would have not only altered your life mentally, but also physically. How has this changed your life and Daniel’s life?
Matt: For me and for Daniel, we'll need to keep ourselves in good shape and be sensible throughout. Regular check-ups and looking after ourselves. Daniel's life will be a little more complex. He will likely need a replacement of my kidney in about 15-20 years, depending on how he goes. That said, the kidney I donated him was abnormally large, so he may get a bit more mileage than the average! Moreover, new medications and research are such that new developments are being offered all the time.
Lana: Finally size does matter! There was a reason you were blessed with an extra large kidney.
As you said, thankfully, new medication, research and developments are rapidly advancing all the time, however, as it stands, what does the future hold for you and Daniel?
Matt: The future looks good for both Daniel and I and there's nothing to indicate we won't remain so. We don't want to get ahead of ourselves, because it's still only very early days and rejection can occur anytime in the first 5 years. As for the future, I'm looking forward to loving and mentoring our four beautiful children. Daniel’s now s in great shape; happy and healthy. And that's pretty much all I want for my kids - health and happiness. And if I can do anything to help them, I'll always do 'whatever it takes'.
Lana: If you’d pardon the pun, I can’t help but think, the Bragg family - really have so much to brag about!!!
Matthew, your story has touched me deeply and I know everyone who reads this interview will feel the same. Your family’s courage and positive outlook on life has also uplifted and inspired me.
Your family will always be in my thoughts and I’ll forever be barracking for Daniel.
On behalf of all of our readers at Wise Womens World.com I thank you again of sharing your emotional journey with us. We’d love to keep in touch to check on the Bragg family’s progress.
