Biripi man Jay Davis has AL amyloidosis and has undergone a heart transplant

Much loved: Jay Davis is passionate about culture and is instrumental in the revitalisation of the Gathang language. Photo: Scott Calvin
Much loved: Jay Davis is passionate about culture and is instrumental in the revitalisation of the Gathang language. Photo: Scott Calvin

Jay Davis is in St Vincent's Hospital in Sydney in a battle for his life.

Proud Biripi man, Jay has given so much to not only the Biripi mob, but the wider Manning community. He is instrumental in revitalising the Gathang language and responsible for teaching it to our youngsters, his students at Taree High School idolise him, and he has brought joy to many of us through his music.

He is a much respected and admired person in the community.

Now, it is our turn to pay him back for all he has given our community, in helping him, his partner Danielle and their two-week-old daughter Eva, through the most difficult time of their life thus far, and make sure we get him back on his Country.

Jay has AL amyloidosis, a rare protein disorder stemming from the bone marrow that attacks the organs. In Jay's case, it has affected his heart, necessitating a heart transplant. Although amyloidosis is not cancer, it is treated with chemotherapy and stem cell transplants. There is no cure, but if patients are diagnosed early enough, it is controllable.

He became very unwell in March, during the record flooding the Manning was experiencing. A trip to Manning Base Hospital revealed he had suffered a stroke and had cardiomyopathy. Many trips to hospital and tests later, it was suspected Jay had amyloidosis.

"Throughout the next couple of months he was just getting sicker. It was all caving in and he was really unwell," Danielle said. "He just couldn't function."

His last trip to Manning Base saw him immediately admitted to ICU, where he waited for a bed at St Vincent's Hospital in Sydney, as the situation became urgent.

While in ICU in Taree, Jay went into cardiac arrest.

"It was horrendous. I was hysterical. At that point I thought I had lost him," Danielle said.

Thankfully, hospital staff revived Jay and stabilised him. The next day he was airlifted to St Vincent's Hospital.

It was horrendous. I was hysterical. At that point I thought I had lost him.

Danielle Donnelly

Jay's sister Joedie Lawler, and mum Aunty Pam (Saunders), were there to say goodbye before he left, and Aunty Pam then went to Taree Airport to speak to the doctors transferring him.

"I called her that night at about 7pm and said 'Mum, Jay's in Sydney, he's alright, he's safe, he's in the best place now, he's going to get better, and I just wanted to let you know because I want you to have a really nice sleep tonight because I know you've been so worried'," Danielle said.

The next morning, Danielle got a phone call from Andy Saunders, Jay's brother, telling her that Pam had passed away overnight at her home.

"We were in absolute shock."

The family were worried about telling Jay, fearing he would again go into cardiac arrest, but the decision was made to hold a Zoom call between family, with a social worker helping Jay at St Vincent's, as he had no family with him.

"It was pretty horrendous. I wouldn't wish that upon anyone. We just wanted to be there with him and cuddle him."

In the meantime, Jay and Danielle were expecting their first child. On Tuesday, August 24, with Jay in hospital in Sydney, Danielle had an emergency caesarean, and little Eva was born. It was the day of Aunty Pam's birthday.

Jay was able to 'take part' in the birth via Facetime, with his brother Graham, who lives in Belmont, by his bedside.

On the following Friday, Aunty Pam's funeral took place.

"Again Graham, the amazing man he is, went down to sit by Jay's bedside. At this point Jay decided he couldn't watch (the funeral), it was just too much for him," Danielle said.

The next morning, Jay went into surgery to have an ecmo - a life support machine that pumps blood outside of the body - installed. He has been under sedation since then.

It was hard leaving him because I didn't know if I was going to see him again.

On Wednesday, September 1, Danielle got the call to go down to St Vincent's as fast as she could.

"I think that's the first time I broke down, because I was grieving," Danielle said. "We all thought 'this is it'."

Friends quickly packed up Danielle and Eva, and friend Janine Roberts drove them down to Sydney, where they have been staying in hospital accommodation since.

Danielle went to the hospital with Eva the next day and sat with Jay, talking and singing to him.

"I put Eva's hand on his hand, and I put Eva right up above his face and she just plopped hands on his face and it was just beautiful, she was touching him.

"It was hard leaving him because I didn't know if I was going to see him again."

That night, Danielle got a call from the hospital to say they had found a heart donor for Jay, and if the heart was a viable organ, they would operate on Friday morning.

The surgery went well, and Jay is now back in ICU on life support. They have taken Jay off sedation, and are now waiting for him to wake up.

Long road ahead

While Jay now has a new heart and it is working well thus far, he still has a long road ahead with recovery and treatment.

"The doctor said he's got a really long marathon ahead, and he's already covered a couple of kilometres, and they're substantial," Danielle said.

He started chemotherapy a week before the transplant, and will continue receiving it for the next three months. He will then undergo a stem cell transplant within the next three to six months.

Danielle is waiting until Jay wakes up, so she can visit and he can meet little Eva in the flesh. Once the long-awaited meeting has happened, Danielle will come home and arrange rental accommodation in Sydney and get ready to move down, so she can be with Jay during his treatment.

In addition to needing to pay rent in Sydney, the couple are already paying rent on their home in Old Bar, and a mortgage on a block of land and a house that is due to start being built this month.

With Jay not able to work, and Danielle on half pay as she is on maternity leave, this leaves the couple with a huge financial burden, on top of the stress they are already enduring.

And this is where our community can help.

Jay's fight for recovery

With permission from the family, David Liddiard OAM contacted local musician and friend of the Saunders family, Matt Zarb, on Father's Day, and Matt got things rolling for the fundraiser.

Within one hour of going live, the campaign had raised $10,000. Within three hours, it had raised $20,000. At the time of writing, a total of $44,483 has been raised.

"I think right now our community has done an incredible job. For a very small community right now to have raised that amount, I think that is just a testament to the man that he is and also his family. There's not a person that's met Jay who doesn't get affected by him in a great way."

Jay and Danielle are very private people, and Danielle said that when the fundraiser first went live, she felt very vulnerable.

"I know Jay is so private, and I had to think through how he would feel about it all. And then I thought, he'll have to be fine. And then when I saw this going on, I couldn't believe it. I don't know half the people on that page. I was just blown away. I didn't expect it," Danielle said.

"This will be his little push along, seeing everyone be so supportive of him."

You can donate to 'Jay's fight for recovery' at www.gofundme.com/f/jays-fight-for-recovery.