Williams Brothers Wish Inc.

Life is forever evolving, we are not the same as before we started our Duchenne/ Becker Muscular Dystrophy journey, we are different and that’s ok. Because life has new meaning, life is now cherished. But I will start at the beginning so you can understand and hopefully share in our hope that there is a better tomorrow, while still relishing what you have today.

Everyone thinks they have time in this life, but the reality is, sometimes your road takes you on a different path, an unexpected path not budgeted for. Our family tragedy hit sooner and twice as hard as most.

In December 2014 at a visit to our paediatrician for our oldest son Oscar, then aged 6, we first heard the words, DUCHENNE MUSCULAR DYSTROPHY, which was a slip of the tongue by our doctor, who was on the phone discussing his initial bloodwork.

These three foreign devastating words that hold such costly multiple losses became our life.

Our youngest son Hugo, started his journey of diagnosis two months later at the age of 2.

After a year of bloodwork, physical tests, genetics, biopsy, multiple of specialists, 2 neurologists, and 3 changed diagnoses of Limb Girdle, Becker and Duchenne, and a National Muscular Dystrophy database that tells us our boys have a unique mutation (exon 75) within a rare incurable disease. We thought we were finally at the end of our MD diagnosis road, but unfortunately it seemed, back at the beginning, at those 3 words, DUCHENNE MUSCULAR DYSTROPHY.

It was a long period of grief, loss, acceptance, balance and finally the power of love to stand up and fight for our sons Oscar and Hugo, to have the best life we can give.

Our superheros have always struggled with cognitive processing, sensory issues, speech, language and communication, so it was no surprise that in 2017 both boys were officially diagnosed with Autism as secondary diagnoses. But as research has become one of the keys to our lives we have discovered that there are so many young men equally affected by the Autism brush, Duchenne/Becker MD is not just a physical disability.

There aren’t many times in life you get to hit the restart button, but in May of 2017 after 18 months the boys genetic testing results came in from Perth. Our Neuro, Dr Cairns waved what felt like a magic wand and has given us the impossible, a new diagnosis.

We are so overwhelming happy to say the boys have Becker’s Muscular Dystrophy. So, strange to say happy, but with Becker’s brings hope, hope that our boys grow to men.

We have grieved for our boys and yet somehow through what seems like a miracle we have a new start with potential to longevity to life in comparison. We are by no means out of the darkness of Muscular Dystrophy and will continue our fight and our charity for the boys, but Becker’s is the less aggressive of the Dystrophin Muscular Dystrophies.

Unfortunately, ongoing costs will increase as this horrible disease, Becker’s takes hold, wheelchairs, lifts, household aids, communication aids, mechanical ventilation, respiratory simulation, simulated cough machines, transport modifications and services with OT, physio etc are but to name a few of the costs we must factor in.

But not forgetting that our boys also must live an extraordinary life while they can still walk is also one of our major mile stones we wish to make true for them and yes of course this also comes at a cost.

With our new rediagnosis we do have massive reasons to celebrate and from what our journey has already taught us is that you must live every day, so we will continue to do just that.

We need our community more than ever to stand with us against this horrible disease, we ask for your support by joining us on our journey.

With Deepest Thanks, Anna and John Williams (aka Mummy and Daddy)