The Future is Daunting...

For Parents of a boy (and in rare cases girls) diagnosed with DMD the future becomes a very daunting place, there are so many things that will need attention and consideration things that in everyday life we take for granted, the future for us is very scary but also exciting!! Yes I hear you say how could it be exciting, well it is because there is so much happening in the research world & awareness is really starting to get out there that we need to find a treatment and cure ASAP to save our innocent care-free children, it’s exciting to think that within a decade they will have treatments in place that will reduce the degeneration and make life more comfortable and most importantly give them more time!

When my brother was diagnosed in the late 80’s things were so different, the local doctors and hospitals had never dealt With DMD and most knew very little or nothing about the disease, there were not many treatment options and not much help available, my parents had to fight every step of the way with everything from getting a wheelchair for my brother to getting the primary school he attended to put ramps in for him, he was discriminated against severely by his school and not so much the children but some of the teaching staff. Mum and Dad had a real struggle and there was very little hope of finding a cure or treatment to help my brother in his life-time, He outlived most of the boys in the support group we attended his lived to 26 years without any treatments i.e.: steroids, operations, night splints etc. so it makes me hopefully in this day and age with all the available treatment options that our boy Kye who is only 16 months old will have a change to have a much longer and more comfortable life and ultimately there is a real change that a cure will be found in his life-time.

I know boys now are living into their 30’s and even 40’s with DMD oh course this is not easy for many of them and a lot of changes to lifestyle etc. have to be made to help them live this long. Comfort for me was my Brother’s only ever complaint he couldn’t get comfy in his chair we tried all types of cushions etc. but didn’t have much success in this area (mind you the OT in the area was I’m sorry to say a complete ignorant moron who didn’t seem to really care) I know people sometimes struggle to understand people who are different to them and if they have never had any mobility issues then they are simply ignorant for the most.

What I have learned from my parents experience is to ask questions, Mum and Dad were very shy people and didn’t like to step on peoples toes I have learned that to get anything productive done you have to ask questions and be a force to be reckoned with or you just don’t get the results you need, I also learned from my parents that things happen in our lives but you just take them in your stride and do the best job you can do, they gave my brother such and awesome and amazing life he was just treated normal by us all, the care in which especially my mother gave to my Brother amazes me and inspires me to give out little man the best care, My Mother never complained or moaned she took care of my brother to the best of her ability and I know they formed an amazing bond. My Parents love us all the same and I know they would do anything they could to make our lives easier they are so involved with our boy Kye and all our children for that matter.

When we found out Kye had DMD they told us in no uncertain terms that they would support us 100% whatever decision we made, they stand by our decision to continue the pregnancy and I know they will be there along with my Sister Jo and her husband Jeff who will all be there to help in whatever way they can to make sure Kye has the best life and care! I feel blessed to have such a wonderful caring family around me, my older children Jadi aged 17, Alex aged 19, Chloe aged 11 were both a part of our decision and they are so supportive and just love little Kye to bits, I know that in his life Kye will have so much love surrounding him and so many people who care for him in his life that there is no chance of him having a bad life.

DMD is part of our life and of course I wish it wasn’t but I truly believe that we would never have been able to appreciate the good in life without this challenge, DMD was sent to challenge us and make us realize how much of a gift life really is we all have hardship in our lives and some more than others but without the bad we would never appreciate the good!!

Here’s hoping that a cure is found ASAP and no more families have to deal with a DMD as a fatal disease but as a treatable curable disease!!