By Scott Turnbull.
When Oakley was diagnosed with DMD we were looking at possible autism or ADHD as he was not meeting milestones.
At 3 years old we were noticing that he wasnt doing a lot of the things that a child of 3 years old does, i.e. climbing, jumping and general running around.
We had visits to physios and speech therapists where there was a sense of urgency to get some blood tests done for Oakley.
About 2 days later we had a visit from the out of hours doctor telling us to get to the hospital as soon as possible.
Me and my wife went straight away which also meant me rushing out of work to get to the hospital.
We were told that Oakley had very high CK levels and they think he could have either Beckers or Duchenne muscular dystrophy. They went on to tell us what this meant as we had never heard of either of these, Our lives fell and it felt like time had stopped and every emotion thinkable came rushing through at once.
We were told he would be in a wheelchair around 5-7 years old because he wouldn’t have the strength to walk with the disease slowly taking over his upper limb muscles meaning he wouldn’t be able to move his arms and would be on a machine to help with his breathing with the life expectancy to be around 20-25 years old.
It crushed us to think our gorgeous little boy would be denied a long and fulfilled life doing what he set out to do in life. We went through a lot of emotions and got told what we were experiencing was a grieving process for someone who is still alive.
We try to stay strong each day and get our strength from our little warrior and think of all the happy memories we can make whilst we have these opportunities, but the truth is we don’t have the strength, we get it from watching Oakley fight the fight every day. Smiling, laughing, playing as if nothing is wrong.
My message to newly diagnosed parents would be don’t dwell on what will be, but make the most of what you have and treasure every day.
These children/adults with duchenne are our warriors and we can all learn from them on how to get through anything.
How on earth have we done a year in lockdown?
