Donate to help Bentley & his family, MPSII Hunters syndrome

Hi, my name is Michelle and I am fundraising for the beautiful Bentley boy and his incredible little family. As I’m sure you all saw B has been diagnosed with MPSII - Hunters Syndrome.

Unfortunately this Syndrome is life-long, life-limiting and has no cure. He will be having Infusion weekly at Royal Children’s for the rest of his life, which will help slow the effects of the Syndrome off for as long as possible.

This will mean weekly trips to Melbourne, accommodation, fuel, days off work etc for Bentley, his parents and his baby sister Mia, forever. As you can all imagine this is not only going to take some juggling but is going to be very costly.

Bentley is a beautiful boy with an incredible nature and a real spark who loves to kick the footy and be always active. He loves all his sports and the outdoors.. but especially Footy!

So please join me by reaching into your pockets to spare whatever you can to help this incredible little boy and his family kick the footy for as long as possible.

You have got this B and we have all got you.. xoxox

Below is Chloe’s social media post sharing with their friends and family to inform them..

Our Beautiful Bentley Boy!

The last couple months have been a living nightmare.

Bentley has been diagnosed with a very rare condition, one that is life-long, life-limiting and with no cure.

Mucopolysaccharidosis Type 2 (also known as MPS II or Hunters Syndrome), is a rare genetic disorder where the body lacks the enzyme to break down sugar molecules, causing these sugars to build up and cause permanent damage to the cells in his entire body - heart, lungs, eyes, skin, connective tissues (tendons and ligaments) bones and central nervous system (brain and spinal cord).

The positive news is that there is a medication to help slow the progression of his condition, which is an Enzyme Replacement Therapy.

The bad news is that this is to be administered once weekly via IV down in Melbourne, he will need this treatment every week for the rest of his life. Treatment days are a total of 8 hours, not including any travel to and from the hospital.

We have a lot of appointments coming up over the next month and into the future in Melbourne to get some more answers and get an idea of what life will start looking like for him and us from here on out.

We are beyond broken for our little man and our family, but we are so proud of all the things he's had to endure over this last little while. He's always done it with the biggest, bravest smile and continued to be the happy, bubbly boy that we all know and absolutely adore.

Take this as your reminder that if you think something is off and that the professionals aren't listening, to keep pushing for answers and to keep advocating for your children, because you are their only voice.

Also a massive lesson to not sweat the small stuff. You only have one life, it's literally all you get. Tomorrow isn't promised so don't wait until the perfect time to live and make memories, do it now.

Hug your children a little tighter tonight, because you truly don't know what is around the corner.

Mum, Dad and Mia have got your back Bentley Boy, and there is nothing we wouldn't do for you, whatever it takes, we love you so so much