Support Ruby During Her Double Lung Transplant

Hi, my name is Belinda and I have started this GoFundMe to help Mel and Robbie support their daughter Ruby (my niece) through this difficult time.

Ruby was diagnosed in August 2019 with a rare condition called Pulmonary Arterial Hypertension at the age of 8. Pulmonary hypertension (PH) is a progressive disorder characterised by high blood pressure (hypertension) in the arteries of the lungs (pulmonary artery) for no apparent reason. The pulmonary arteries are the blood vessels that carry blood from the right side of the heart through the lungs. About 1% of people globally have PH. As parents, Mel and Robbie were devastated with Ruby's diagnosis as they learnt of the difficult road that Ruby would encounter over the coming years.

In 2019 Ruby was commenced on oral medication to try and slow and improve her disease progression. Over the past four years Ruby has undergone countless echo's, cardiac MRI's, blood tests and right heart catheter procedures with constant trips to her incredible cardiac team at Westmead Childrens Hospital in Sydney.

The numerous oral medications kept Ruby relatively stable up until December last year when her pulmonary pressures increased significantly, and her exercise tolerance reduced further.

In June of this year Ruby had a procedure at Westmead to insert a central line in her chest so that she could receive intravenous therapy to try and reduce the pressures. Unfortunately, this has been unsuccessful, and the only treatment option left for Ruby is to undergo a double lung transplant. This procedure for children along the east coast of Australia is only performed in Melbourne at The Alfred Hospital. Unfortunately, Ruby had to be readmitted to Westmead earlier this month as her body was retaining excess fluid and her heart, lungs and liver were struggling. Initially we had hoped Ruby could go home to Newcastle until a donor was available but due to her recent deterioration her case has been escalated on the transplant list and she now needs urgent lungs. Ruby has been transferred from Westmead to The Alfred today where she will be kept in ICU until her amazing donor lungs are available. The wait time for transplant is unknown.

Mel and Robbie are relocating to Melbourne and will stay there now until approximately 3 months post transplant to support Ruby during this time. Following the extended time in Melbourne Ruby will then be transferred back to Westmead for continued rehabilitation. The costs associated with this will be significant with Mel and Robbie being unable to work as they support Ruby through her surgery and recovery. Over the last nine months there have been many admissions to Westmead and John Hunter Hospital therefore leaving both Mel and Robbie with very limited paid leave so their time in Melbourne and Sydney will be largely at their expense. Covering the costs away from home and keeping their individual family households afloat will be incredibly difficult for them. Both Mel and Robbie have been reluctant to ask for help, but they now need our support.

Through this whole ordeal Ruby has been incredibly strong and brave showing time and time again her resilience. Despite all of her challenges to date she still manages to show that beautiful smile of hers. We can't wait for her to breathe easy and will forever be grateful for organ donation. I know with Mel and Robbie by her side along with the support from the rest of her family and friends this will be achieved.