This is the story of an amazing little boy making the most of an unfortunate situation with the help of his loving parents. The story is written from the perspective of a mother who would move heaven and earth to give her son the best life he could have. The following tells of how this little boy’s big dream became a reality and the positive impact an APD (Automated Peritoneal Dialysis) machine had on his quality of life.Written by PG Ooi – Kevin Tan’s mother
Our son, Kevin has been diagnosed with “Renal Tubular Acidosis” (RTA) when he was 16 months old. He started “Continuous Ambulatory Peritoneal Dialysis” (CAPD) when he was just 8 years old. The Tenckhoff Catheter insertion for his CAPD was done on the 29th of December 2010 just a day after his eighth birthday. It broke our hearts seeing his small body going through all the surgeries but he has proven to be a very brave and strong boy. Despite the challenges we knew we would be facing, our love for him would remain unconditional.
Here is Kevin's Story
By the middle of March 2011, his nephrologist suggested trying the Fresenius Medical Care Stay-Safe solution and with God’s grace his rashes amazingly disappeared. Since using the Stay-Safe solution he has been healthier ever since. We are grateful that CAPD kept Kevin healthy but having to dialyze four times a day had its challenges especially since he was attending morning school. He sadly missed a lot of after school activities having to rush home for his CAPD treatments which continuously made him upset. We knew life would not be the same, but we kept him busy with other activities. We wanted to give him the childhood he deserved because we were worried if he was continuously deprived of these activities, it could lead to low self-esteem in the future.
A holiday to Australia came into the picture when Doreen tried to organise a trip in December 2011. However, due to the inconvenience of the quadruple CAPD sessions, we were reluctant to go so the idea was scrapped. Kevin was disappointed but he accepted and understood our worries. No holiday plans were mentioned again until August 2012 when again Doreen brought up the idea and this time she was very adamant it would work. Her son Benjamin had been doing a lot of research and finally came up with the idea of putting Kevin temporarily on an APD machine. This would allow Kevin to dialyse during the night time so that we could go to Australia without having to worry about arranging his dialysis four times a day.
That started the ball rolling and things moved quickly and efficiently. We consulted our nephrologist and were surprised when she too gave us a very positive answer. She fully supported the idea providing that Kevin’s blood test was good and we undergo the APD machine training for a week. Our APD machine training was carried out at Penang General Hospital’s Nephrology ward on the 19th of November 2012. Fresenius Medical Care’s Malaysia clinical manager came all the way from Kuala Lumpur to conduct the training together with another clinical nurse. The one-week training went very well thanks to these excellent trainers. They were so patient and committed and even went the extra mile by splitting the training to accommodate my needs. Instead of one hands-on session per day, we had two hands-on trials which gave me more chances to familiarise myself with the APD machine and thus boost my confidence in handling it on my own.
After the one-week training, we were given the clearance to continue using the APD machine for another week at home before leaving for Australia. During that time, the clinical manager and nurse called us frequently to check on our progress despite how busy they were. Not only did they continuously check on how the APD machine trial went, they also gave us lots of guidance on what to bring, forms that needed to be completed, airlines and immigration requirements and other endless trip advice. With their inputs we managed to make a long checklist and also managed to deal with the respective authorities without any hiccups. They are true responsible professionals in their jobs - what they actually did exceeded their job requirements.
Since that was our first overseas trip, we were full of worries and didn’t know what to expect. Anxiety started to set in and with so many “what if” questions in our heads, we almost cancelled the trip. But in the end, those wonderful calls actually built up our confidence. We were very blessed to have a strong support rally behind us especially from Fresenius Medical Care in Malaysia and Australia and also Penang General Hospital’s consultant nephrologist and her CAPD team. We remember clearly when we were told that the Malaysia team would go all the way to ensure that the trip would be successful; a very committed assurance that touched our hearts. Kevin would finally and definitely have the chance to travel.
On the 5th of December 2012, our family of three boarded for our flight to Melbourne. Although we looked the same as the other passengers, only God knew what it took for us to make this trip. Kevin was so happy and excited that he was finally in the airport, which confirmed he was actually going to Australia.
The holiday was a dream come true for Kevin and the obvious joy written all over his face was testimony that he had the time of his life. We captured thousands of pictures of him having fun, running, climbing, playing games, kicking the footy and best of all enjoying his food. He was such a different boy and to know that the machine could make such a major difference to the quality of his life is just beyond description. It was indeed a holiday that he will cherish for the rest of his life.
After spending 23 days in Australia and having successfully covered many places of interest, we finally said goodbye on 28th December 2012 (coincidentally Kevin’s birthday.) The final day was hard as tears flowed freely. Not only because we were sad to leave but also because we realised how much support we had in making this trip a possibility. A holiday that we dared not dream became a reality. There we were having spent many amazing and glorious days abroad, were now ready to go home taking with us wonderful memories.
The APD machine was truly a godsend. For once we were free to travel and enjoy our holidays. Best of all, Fresenius Medical Care Malaysia arranged for the machine, PD solutions and all the necessary accessories be delivered directly to Doreen’s home before our arrival. The APD machine made it possible for us to visit so many places in Australia, which had been planned out in detail by Doreen. We managed to visit many places of interest like Mount Dandenong, Lake Entrance, Canberra, Sydney, Blue Mountains, Philip Island, 12 Apostles and many other wonderful places.
Upon returning home to Penang, the first thing we did was sit down with Kevin and explain that he would need to return to CAPD. After all the freedom he got with the APD machine, it was obvious he was upset but he understood. I asked him if he would return to Australia if he was given an APD machine in the future. His response caught me by surprise. His candid answer, straight from his heart was that he wanted to join his friend in co-curricular school activities if he didn’t have to do CAPD during the daytime.
For Kevin it was not just going for holidays, as he knew how costly it would be. It was the freedom - freedom to participate in school activities which he yearns for, freedom to travel locally and the ability to lead a more normal life - to be like his friends. It is sad to hear that from an active 10-year-old boy but we continue to have faith that one day in the very near future, he will be able to use the APD machine once again.* This is the freedom that he is praying for.
We would like to take this opportunity to thank the Fresenius Medical Care teams in Malaysia and Australia, especially to those who were there every day to make this trip possible. Praise also goes to the staff at Penang General Hospital especially to the consultant nephrologist and her CAPD team, Malaysian Airlines personnel and not forgetting my dear sister in law Doreen and her family. Kevin is so blessed to have so many caring people whom he has crossed paths with. Thank you, thank you and thank you. God bless.
*Kevin is supported by the Malaysian government’s sponsored CAPD program. Currently, his family are unable to carry the additional costs that APD poses. The family is still searching for the possibility of a subsidy for Kevin to use APD.