Help Ethan with a Accessible Wheelchair Vehicle.

Our Extraordinary Ethan needs your help.

 

One week before Ethan’s 5th Birthday we received the devastating news that our precious fun-loving boy had been diagnosed with Duchenne Muscular Dystrophy. This was almost eight years ago. This is when our Duchenne journey began, and our lives changed forever!

 

What is Duchenne?

Duchenne Muscular Dystrophy is a severe degenerative muscle wastage disease. 1 in every 3500 boys are born with Duchenne, and 1 in every 50 million girls are born with Duchenne. It is mostly a genetic disorder, but 30% of boys born are due to a random mutation. I am not a genetic carrier and have no family history. Duchenne can affect any boy or family. Duchenne is caused by a mutation which prevents the body from producing a protein called Dystrophin. Dystrophin acts like a shock absorber when muscles contract. Without Dystrophin, muscles become damaged and weak.

Duchenne is usually diagnosed between the ages of 4 to 6yrs. Muscle weakness becomes more evident around the age of 4. At this age Ethan was struggling to keep up with his younger brother who was two years younger, had an awkward run and couldn’t jump no matter how hard he tried. Muscle loss occurs first in the thighs, legs, pelvis followed by upper body loss. Duchenne is 100% fatal, usually from lung or heart failure. There is a shortened life expectancy (mid to late twenties).

Currently there is No Cure, only medication known to slow the severe progression is steroids. Ethan has taken steroids since he was 5.5 years old. Whilst steroids have given Ethan the ability to still be reasonably mobile and able to still walk short distances at nearly thirteen years of age, steroids have also caused Ethan’s growth to be stunted, caused a dramatic increase in weight gain and affects his moods and ability to cope in certain situations.

Ethan also has Autism Level 2, which steroids exacerbate his moods and anxiety. So, whilst steroids are helping in one way, they make his Autism more challenging.

Brad and I have always taken a positive outlook with Ethan’s condition and have always been hopeful of a cure or drug to stop the progression. We are now eight years into Ethan’s diagnosis and there is still no other treatment except steroids. We are realistic that the time has come to start planning for the next stage. We are so grateful that Ethan is still able to walk short distances at almost thirteen years of age, but we know that in the next 6 to 12 months that Ethan will stop walking. This will be heartbreaking for us and challenging in so many ways.

 

Ethan needs an accessible vehicle.

We are grateful that The Australian Government will purchase a standing electric wheelchair which will provide freedom and independence for Ethan. Unfortunately, the only assistance we get towards an accessible mode of transport (Vehicle) is NDIS will pay for the adaptations (modifications) of the vehicle. We will need to purchase an accessible vehicle ourselves. Financially we are not in the position to purchase such a vehicle due to some point I will need to be Ethan’s carer which means a loss of income to help support our family. The vehicle must meet certain stipulations and needs to be almost new to last Ethan’s lifespan. (NDIS only pay once a lifetime towards adaptations for a vehicle)

We are currently in the planning process to build an accessible house to enable us to provide the care for Ethan so he can continue to have a quality of life. This is not part of our fundraising but explains where our own money is needed.

Our fundraising focus is to be able to purchase an accessible vehicle and to continue to create cherished memories with Ethan. We have plans for family holidays to visit extended family and friends over East, hopefully get to Queensland (with Make a Wish Foundation) to swim with dolphins and cuddle a lion cub. Experience some amazing family adventures whilst we can!

Our Go-Fund-Me page is only part of our fundraising we have planned. We endeavour to do a ‘Bingo and Games Night’, ‘Golf Day with Brad Pitt’ and numerous prizes online along the way.

We are hoping to kick start our fundraising with this page and continue over the next four to six months.

Help us help Ethan by giving a big or small donation.

We are so grateful for any donations!!

 

Big love and hugs,

Brad, Ange, Ethan and Tristan. Xx

 

 

Message from Ange.

It is never easy to ask for ‘Help’.

Being Ethan’s mother, has taught me lessons I never knew I needed to learn. His Autism and Duchenne gives him such a clear perspective on life. He is so strong, brave, resilient and most of all loves so deeply. He takes each day as it comes, never seems to worry about too much. And has taught me that we can’t be strong all the time. It is ok to ask for help!

Pride aside!

I am asking for our precious boy!

Love Ange Xx