Hi! My name is Tiffany, I have created this GoFundMe page to raise funds for my brother, Barry-John and his wife, Rebecca whilst they navigate through the journey that no parent ever wishes for.. their two year old son, my nephew - Jaxon as he battles against a very rare condition, called Langerhans Cell Histiocytosis.
Christmas 2016 (in the photo above) Jaxon got an ear infection, this ear infection was persistent and poor Jaxon could not fight it off. Over in Perth where they lived, his mum, Becky was at her witt's end. With frequent visits to the ENT specialist, they just could not get on top of it. Jaxon was put under general anesthetic several times over 12 months to have his ears cleaned out, andenoids removed, gromits put it.. the most recent time nearly losing his life on the operating table as fluid flooded his lungs. Each time he was operated on, Barry-John and Becky hoped that the ear-infection would finally be gone.
March 2018, I was absolutely thrilled that my only family in Australia, Barry, Becky & Jaxon would be moving over to the East Coast to live two doors down from me!
And what a blessing that would be in more ways that we could ever have imagined.. Jaxon was booked in to see a new ENT specialist in Port Macquarie who immediately picked up that this was not just a simple ear-infection after all.
Jaxon sent to Westmead.
Naively, we were all chatting beforehand about how we couldn't finally wait to get this ear infection sorted out once and for all.. we couldn't wait to see how different Jaxon would be in himself once he was no longer living with the pain of this ear-infection.
He was booked in for brain scans. After, in the meeting with the ENT Proffessor to discuss the results, they were smacked bang in the face with the diagnosis of LCH. Jaxon's case would be handed over to the Oncologist.
Jaxon's ear infection, was no ear infection.. the gunk leaking from his ears was actually his skull eroding away, the residue from the bone matter. It had also been attacking and had eaten away the bone around his sinus'.
The cause being a very rare condition known as LCH. Langerhans cell histiocytosis
Jaxon's prognosis has been very positive, we have been blessed in so many ways, from him moving over to the Mid North Coast and seeing a new ENT which led to early detection, to finding out that the condition has not spread to any of his major organs or bone marrow.
However, Jaxon has already began steroid treatment and chemotherapy. And while we are remaining positive and thankful I would really like to raise some funds to relieve my brother and my sister in law from the financial pressure and worry that comes with having a seriously ill child, life still goes on and bills keep coming in. Becky's mum has flown over for three months from Dublin to offer emotional support, my mum is on her way over too as you and I know, we all need our mum in times like this.
Any money raised will go towards expenses like fuel back and forth to Sydney each week, flights and travel expenses and cost of living for close family as they come to support.
Barry-John currently works 4 weeks away only to be home for 1 week at a time from Darwin, it would be lovely if he didn't have to work away for quite so long at a time while his son undergoes chemotherapy. I am sure there will be many unforeseen expenses that will arise... So any donation, large or small that you could part with would be truly appreciated from the bottom of my heart..
Thank you for taking the time to read,
Please share on your Facebook timeline to get our story out there and also spread the awarness of LCH
- Gordon Hamilton
- Curves Kempsey
- Gordon Hamilton
- Veronica Wynan
- Kyle Faiers
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