Please help our Matt to overcome an Ameloblastoma Tumour of the right jaw involving major surgery and a long road to recovery.

Hey there, my name is Jen. Our lives changed in an instant when my

15 -year-old son, Matt, was diagnosed with a rare Ameloblastoma Tumour in his right jaw in August this year.

Before this diagnosis, Matt was a healthy teenager. He has special needs and is the kindest, most loving young man you could meet. He loves building model kits and LEGO, spending time with his chickens, and being with his much-loved dog, Eva.

A few months ago, Matt developed an earache and toothache. Like any mum, I took him to our local doctor and our dentist for a check-up. During a routine dental X-ray, the dentist discovered a large and unexpected lesion in his jaw. We were immediately referred to John Hunter Hospital in Newcastle ( a major large specialist hospital), where medical specialist investigations and scans confirmed the rare and unfortunate diagnosis. It has been heart wrenching since we first saw those pictures on the scans in our sons jaw and face.

Matt's Surgery and Treatment

Matt now faces major surgery and on going surgeries involving three specialist surgical teams:

• A maxillofacial surgical team will remove the tumour and reconstruct his jaw.

• A vascular surgical team will connect blood vessels in his head, neck and mouth.

• An orthopaedic surgical team will remove part of the fibula bone from his leg to rebuild his jaw.

This complex procedure is called a Fibula Free Flap reconstruction. Around 70% of Matt's fibula may be used to reconstruct his jaw. It is a long and complex operation which will be really tough on Matt and our family. Matts right side of his jaw and teeth with the Tumour will be removed ( around 6-8 bottom teeth will be lost permanently) and his new jaw rebuilt in this complex series of operations. It is definitely a long and scary road ahead. Matt will have his leg bone which apparently you can live without moulded into a new jaw. After each operation has healed the next phase of his jaw and mouth reconstruction should see some denture implants eventually replacing the lost teeth. It is amazing what medical science can do and we are so grateful for the skills of the doctors and medical teams caring for Matt and many of the patients we have met so far. However it is a long and painful road ahead with many potential challenges along the way.

After his first big operation, Matt is expected to spend time in the Paediatric Intensive Care Unit. His care includes using a tracheostomy, a nasal feeding tube and surgical drains while his jaw is stabilised so it can begin to heal. Matt is trying to be brave and will spend several weeks in hospital and months recovering. This up and coming operation is only the beginning. Once Matt has recovered from the initial surgery, he will need specialist dental treatment from a prosthodontist and potentially further operations. His rehabilitation is expected to take one to two years and may involve many Allied health specialists to assist him.

Eating will also be difficult. Matt will begin with a liquid diet and gradually move to soft foods when it is safe. This will be particularly challenging for a growing boy whose favourite meals have always been steak, chicken and burgers. He has been in “boot camp” removing sugar and trying to manage soft healthy foods to prepare his body to make the best possible recovery. His jaw is so painful now and has dislodged some teeth and rearranged his whole right jaw, so eating is hard work and has become quite stressful. It is hard seeing your son go through such tough times. Matt’s well being and self confidence is peddling hard trying to get his head around what he is facing in the coming weeks, months and years ahead. He tries not to complain but goes and hugs his chickens every time he gets sad or scared. Matt is grateful for people praying for him, all the well wishes and those encouraging him with kind thoughts that he meets up with. It definitely does take a community to raise a child through such a time as this.

Why We Need Help

I am caring for Matt full-time and doing my best to be mum to all our kids and family. Matt has Ben his older brother starting Year 12 this term who we are supporting to get through his HSC. His beautiful niece Lylah, and eldest sister Claire her partner Jack all love and adore Matt from Sydney and love to visit when they can. Meagan and Big Ben living locally near us pop around each week to hang with their little brother during this challenge always offering a hug and some kind words of strength and support. All our family have been saddened to see their brother go through such hard times. Matt's dad, my husband James is such a wonderful father coming along to every appointment that he can, and supporting his son at every turn. It has just been so hard for him to juggle his own work as a carpenter and care for his son going through this.

It’s really tough most days getting through medical appointments and trying to learn so much about a condition we had never even heard of three months ago. Ameloblastoma Tumours are very rare. Our family income has been limited and like everyone our cost of living has gone up. while we have been travelling to and from medical appointments, spent days in waiting rooms doing scans and having tests and meeting with specialists regulalry as they monitoring Matt's condition. The mortgage stress has become yet another burden to bear whilst trying to love and support Matt. So we are asking for a little help through this go fund me to ease the worry and stress by reaching out to you today. We know so many people are finding it tough right now and our hearts go out to them too.

Matt currently needs close monitoring around the clock for signs of infection, changes in his jaw movement, difficulty swallowing, increased pain, tumour discharge, loose teeth, and changes in his ability to open his mouth or eat. I spend days taking his temperature, supporting my son and caring for his needs. Up until this point we have used up all our savings. The bills however are slowly mounting up and we haven’t even yet had the weeks away in hospital for Matt’s up and coming surgery and on going medical rehab journey and future operations.

Funds raised will help our family with:

• Travel, fuel, parking and living away from home as we stay in Newcastle.

• Meals and daily expenses during hospital stays

• Current and Future medical, dental and rehabilitation costs not fully covered by Medicare

• Medications, rehab needs and recovery equipment

• Future specialist treatments

• Support our family financially and assist us with out mortgage and bills when we cannot work and are with Matt in the hospital for the weeks and months ahead.

Please Support Matt

As Matt's mum, all I want is to be beside him through this frightening difficult surgery and life-changing journey without the added pressure of wondering how we will even get through this and manage our family’s financial needs. We have felt the love and care from friends and family and both the boys schools and teachers have been kind and caring to our sons and their learning around our medical challenges.

Any donation, no matter the amount given, will help us manage the family finances and focus on what matters most: supporting Matt through surgery, rehabilitation and the long road back to doing some of the things he loves in life again. This is a really tough gig.

If you are unable to donate, sharing this page or link would mean just so much to us so it could reach someone or an organisation who is able to support us in some way or link in with their core values caring for people in the community in need who just need a hand. We so appreciate all the prayers, help, advice and love we have had so far from our friends and family and we look to the wider community for their ability to support us as we walk through a journey no parent wishes on their child. Your support means the world to us.

Thank you for reading about Matt's story and for supporting our family through the toughest chapter of our lives we have faced yet.

With gratitude,

James, Jen, Matt and family