Singleton's Lily Bodiam is facing her incredible journey with an abundance of love, support and resilience.
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Earlier this year, 11 year old Lily was diagnosed with mitochondrial disease - a chronic illness which causes debilitating physical, developmental, and cognitive disabilities with an extensive list of symptoms including poor growth, loss of muscle coordination, muscle weakness and pain.
Unfortunately, the disease is progressive and thus far, there is no cure.
Facing the reality of their daughter’s condition, Lily’s mum, Jaime, and father, Jamie, were determined to fulfil her dream of going to Disney World before losing her ability to walk.
However with a family of six and the growing costs of travel, the prospects of fulfilling such a dream were looking dire.
Aware of the Bodiam family's current situation, Jamie's working family at Komatsu decided to intervene.
Unbeknownst to Jamie, his boss Tom Muraski established a go fund me page in the hopes of raising enough money to cover the cost of their trip.
By the time Jamie was aware of the page, $3000 had already been raised.
After being shared 414 times and receiving 204 donations from community members, anonymous donors and beyond, the ambitious goal of $25,000 was achieved in the space of just four weeks.
As well as this, the Bodiam family have received tremendous support including seven return flights to LA, accommodation while at Disney World and further fundraising donations from a range of incredibly generous people.
Jaime says they are absolutely overwhelmed by the incredible support they have received and could not be more thankful.
"We would like to say a massive thank you to everyone involved," she says.
"Due to the generosity and support of so many within the Komatsu family, the Singleton community and our family and friends, we are now able to fulfil Lily’s dream of going to Disney World.
"It is something we never could have expected."
Due to Lily’s diagnosis, the Bodiam family want to shed light on this relatively unknown disease and raise as much funds as they can for Mito research.
A fundraising Ball is being organised for August of this year as well as a local team to participate in ‘the bloody long walk’ on September 4.
The bloody long walk is a 35km walk along Sydney’s north shores in support of mitochondrial research.
“We are going to organise a team to participate in the walk, with T-shirts to show that we are supporting Lily and those with mitochondrial disease,” Jaime says.
If a 35km walk is not for you, there is also a ‘Stay in Bed Day’ initiative which raises awareness and funds for further research.
Lily and her family will be heading to America on May 9, and in order to document their incredible journey a Facebook page has been set up called Love, Strength and Mito - Lily's journey.
The page is a way to allow people to follow the Bodiam family’s American adventure and beyond.
There is no doubt that this will be a trip of a lifetime which will provide the whole family with memories to cherish for the rest of their lives.
