The Truth.....

I know that all of us affected in some why by DMD wonder how do we tell our boys & Girls the truth about DMD, the ugly cold hard facts the are gut wrenching!!

We have not gotten to this point with Kye yet as he is only 18 months old, but I have been there with my parents & sister when my brother asked questions about what was wrong with him, my brother was 10 years younger then me and when he was diagnosed I was 17 nearly 18 years old, he was 7 when we got the news that he had DMD a disease we had never heard of, it was such a shock to us all then to find out there was no Cure or Treatment for the Disease was just the icing on the cake, It was such a hard time for us all finding out and for my sister and myself the truth was horrible for us as well, we could carry this disease!!!

Our family is very strong and resilient we didn’t treat my brother any different didn’t make him feel like he was different and I am glad for that of course it took a long time to accept this was happening to our family, Mum & Dad were not given very much information to start with, once they started to attend a support group in Sydney Australia and met other families with children who also had DMD was a real eye opener but also a real help to us all, the group was fantastic and the genetic councillor was always there to answer our questions as well.

One thing we learnt early was not to wrap Paul up into cotton wool which so many parents do when there child is diagnosed with a disease it’s human nature to want to protect them and I am not in any way criticising the parents who choose this as an option but from the outside looking in it was evident to me that some of these parents started to carry their boys around or put them in prams and even manual wheelchairs some of these kids were so little and the effects of the disease were not yet evident. I now it’s so hard you want to protect them from hurting themselves from suffering and in all honesty I think sometimes I get a little too worried when Kye climbs on things and runs everywhere but I take a deep breath and say NO let him be independent let him do these things now because in the future he probably will not be able to.

My brother walked up until he was about 12 years old, it was so hard at times especially about 9 and 10 years old when he really started to have some really bad falls, skinned knees and elbows became a common occurrence, falls of his bike, bloody noses etc were so heartbreaking to watch but my brother just got up and got on with it, he hated people trying to help him and refused to let us put him in his manual chair he would have to be exhausted to resort to sitting in that thing as he called it!!! It was hard but I truly believe we did the right thing in letting him be independent and walk for as long as he possibly could before that freedom was taken from him. We found ways around things, the school put in ramps, we bought him some skate pads, he wore knee pads, elbow pads etc and they really did help, it bought a smile to his face that he could now get around and his knees would no longer get skinned, to be honest I think when he got older he had more falls out of his Electric Chair due to driving crazy and trying to do things that he shouldn’t have been trying, but he didn’t care he was a free spirit and did his own thing!!!

It’s really hard to know how and when to answer questions, I use my parents experience to guide me, they explained he had DMD and what it was when he was diagnosed, but never went into the cold hard facts, they let Paul ask the questions and answered them honestly when he did, of course he asked the question that most parents dread “Am I Going to Die”, we told him with honesty what the life expectancy was but also explained the none of us know when our time is up and that there was always hope for a cure or treatment, we always made sure he was aware of the amazing people out there who were spending their time trying to figure it out and find that cure. It was amazing my brother never gave up hope even when he was in the hospital with Pneumonia he she had hope, in the end he said no to interventions that was his choice and he left this world on his own terms, I never judged his decision he lived his life as an independent person who had the right to make these choices himself, he was 26 years old and is and will always be my absolute HERO!!!

We have to look forward to these hard and life changing choices and discussions that we will inevitably have to have with our Son Kye, but I believe that honesty is the only way to go, we need our kids to trust in us so the truth is the only way! It’s like everything with DMD, we will have to make a decision on Steroids and I think that is a totally personal choice but I do however think that a lot of parents make this decision without all the facts in their hands, it’s like all medications they have side-affects that affect some and don’t affect others, it’s important I think that parents are given the opportunity to learn as much about these drugs that they can before making the choice to use them, I can totally understand as a mother of a child with DMD that we want to do anything we can to help our children have a better and more comfortable life and sometimes we just do what we are told because people tell us it’s the only way but I want to be well informed before making such an important and life changing decision, it’s hard to know we hear so many conflicting stories and every case is different, I know some people who’s children have really benefited from steroids and others who have had issues with them, I am keeping an open mind and we will cross that bridge when it comes with as much information as possible. My brother Paul was never on steroids and that was a personal choice at first by my parents then later on a choice made by Paul himself, I am not saying it is wrong to use Steroids I’m saying it’s simply a personal choice to be made and not judged by anyone what’s right for some may not be right for others.

My brother Knew his life would probably be short, he never let that get him down it made him more determined and also us as a family more determined to fit as much as possible into his life and to fill his life with love and joy, he was one of the happiest people I have known, he was and is a true inspiration to us all, I hope that sharing this experience has helped !!!

Love and hugs to everyone touched by Duchenne