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Hayden Fortune

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$844

My Goal

$750

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I’m fundraising in recognition of my son, Benjamin Fortune.

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Latest updates

01 Aug 2026 by Hayden Fortune

A Little Big Journey.

Hello, I'm Dad.

On the 30th of April 2026, my beautiful son Benjamin Michael Fortune popped into the world and we couldn't be happier, all the months of waiting for our cuddle and we finally got it. Tragically however only an hour later he began to seize over and over, the midwife called in the paediatrician to observe his unusual movements but was deemed to be "normal". Fortunately for us the midwife stepped up and had the matter escalated in which Benjamin got sent to Nepean the following day and was then hooked up via EEG.

Whilst our stay at Nepean lasted longer than we had hoped, we were farther from coming home than we thought. Observations of the EEG diagram showed that Benjamin continuously suffered seizures on and off all day with only very brief pauses in between. He was seizing more often than not and the only way to reduce it was to try and plan out a set of medications and hope that it would either remove the seizures all together or reduce them to a functional level.

After a week of being at Nepean we were in contact with a team of specialists who were very interested in Benjamin's case, we were then told that he would have to have an MRI so that the Neuroscience team could try to understand just how his brain operates and if there is any damage due to the seizing.

After the MRI we then were sent on over to Westmead where Benjamin stayed in the epileptic ward with either myself or Molly overnight, fortunately the team at Ronald McDonald house had a room for us to stay in and plenty of food to get us by and we wouldn't have been able to do it without them, I am so utterly impressed with the charity and staff and will thank them for the rest of my life for what they did for us.

Then tragically it all started going downhill.

At first we were informed that he may be suffering from microcephaly and a deformation in the structure and white matter of his brain. Along with that we also found out that he is blind and deaf at the organ which connects from the brain stem due to the way his brain developed in the womb. No matter what he had at that time we knew that we would love him forever and would get him any help he needed, we decided that we will move to Dubbo to be with Molly's family so that she gets all the support she needs as we weren't sure what sort of challenge we were going to face in the future.

However, about a month later still in hospital, we are told the truth in a seperate room with not only our neurologists but our social worker also.

Benjamin has a rare condition making him the fourth known child with a mutation to the LONP1 gene. I'm not great at remembering the little details but for short, the mitochondria in our body is responsible for generating energy that helps us function, fight off sickness and recover from injuries. His mutation makes these cells not function and thus if he gets sick or injured or has non-essential surgeries he may pass.

This is extremely difficult for us as we have a 2 year old who is always bringing home something from daycare and thinking about this always makes my heart sink but, we can't give Benjamin hearing aids or eye surgery as the trauma alone may be fatal, and so he cannot see his brother, he cannot see how proud we are of him and just how much we adore him, and he cannot hear us tell him all the time just how much we love him.

Benjamin's condition renders him not fit for life, and so the doctors have given us less than 12 months to make memories with him before he departs. It's hard not to anticipate such a moment but we can't help it. We will still visit him and celebrate his birthday every year as he is still apart of us forever and always.

This will be a big journey for us in hopes to help research a way to detect and fix this from happening to others. 

Thankyou so much for reading my nonsensical rambling. Much love.

My Impact

So far this year I helped provide...

17

Hours of research

For every $50 raised, one hour of research is funded

Biggest Donor

Jean-ius Donor

$163

Thank you so much to my biggest supporter, Anonymous, for donating an incredible $163 to help fund vital research into curing children’s genetic diseases.

My Achievements

Raised so far

With your help, I have raised...

$844

You’re helping fund research to find cures for kids with genetic diseases. Every dollar counts!

Biggest Donor

Anonymous

$163

Thank you so much to my biggest supporter, Anonymous, for donating an incredible $163 to help fund vital research into curing children’s genetic diseases.

My Impact

So far this year, I've helped fund...

16

Hours of research

Every $50 raised funds an hour of vital research.

My Team Members

Thank you to our donors

$56

Shaz Lanser

Good luck with your little X-Man ❤️‍🩹

1 day ago

$55

Emily Minney

1 week ago

$107

Erin’s Mum

Thinking of you Hayden, Molly and darling Benjamin

1 week ago

$61

Vicki Hyam

1 week ago

$61

Callum Burrell

1 week ago

$61

Julie Healey

💙

1 week ago

$107

Rod Aitcheson

Enjoy your time

1 week ago

$55

Samantha Bolton

Benji is just gorgeous 😍 Sending you strength to get through this difficult time. I hope my small donation helps Jeans For Genes find some answers.

1 week ago

$163

Anonymous

1 week ago

$117

Shayne Fortune

Love ya bro!

1 week ago