Just like the lyrics to one of his favourite Pink songs, Shane Kemp is keen to ‘get this party started’ by creating many fun and happy memories with his family and friends.
Shane, or Shano as he is affectionately known, has been in and out of hospital since the day he was born but one would never know looking at the bubbly 22-year-old who has already created many great memories.
Just last Christmas Eve his family backyard in Wahgunyah was transformed into a magical winter wonderland as Shane celebrated a ‘White Christmas’ with 100 friends and family members.
You could say it was a miracle, but in reality it was the work of his beautiful family who surprised him with a backyard full of real snow with the help of a snow-making company.
It was just one of many unique experiences that his family have been creating with what time they have left with Shane.
“He loves Christmas, it’s his favourite time of year and we knew he would love this surprise,” his mum Raylene Finnemore said.
“We are trying to think of things for Shane that we all take for granted, things that we all have the possibility to do ourselves but which he doesn’t.
“The White Christmas was perfect.”
Shane was born on July 11, 1995 and straight away Raylene knew something was wrong.
He was born with Downs Syndrome, a hole in his heart, a murmur, enlarged kidneys, jaundice and a liver infection, but that was only the beginning.
Shane was later found to have 2 VSD’s (Ventricular Septal Defect) one large and one small, as well as a murmur.
But it did not end there, Shane was diagnosed with Hirschsprungs Disease, a condition that affects the large intestine (colon) and causes problems with passing stool.
As a result Shane needed to have a colostomy bag for several years.
The Free Press shared Shane’s story in November last year to promote a Sportsman’s Night at the Wahgunyah Community Centre that raised $16,000 for the family.
“It’s been hard because we are very private people but the doctors said it’s ok to be open about our life and ever since then just having that money there for this has been great,” Raylene said.
“The money has gone towards things like medical expenses, petrol to go to his appointments in Melbourne and cover all of these expenses that would normally stretch us badly.
“We can’t thank everyone enough for what they have done and given this family, every day we get to share with Shane is a blessing.”
In Shane’s short 22 years he has had 24 major operations, three of those were to save his life, and more than 45 admissions to the Royal Children’s Hospital alone, as well as countless visits to Wangaratta Base Hospital.
There was a period between 2010 and 2013 where he lived mostly in the Royal Children’s Hospital due to complications with his bowel.
He now suffers with a prolapsed stoma and a large incisional hernia that takes up his whole abdominal wall.
“He loves music and relies on it to calm him down, so I guess it’s his outlet,” Raylene said.
“Shane has never had a pain free day in his life and yet he has the biggest and most beautiful smile you will ever see and it’s hard not to smile with him when he does.”
The surgery Shane now requires is unfortunately so detailed that the success rate is low and the death rate is high.
It was a heart-wrenching time for the family as surgeons went back and forth on the idea of operating.
“Every time that they would change their mind we would prepare ourselves emotionally for their decision and go back for another appointment and they would change their mind again and it was just a rollercoaster of emotions for us,” Raylene said.
However, with Shane’s previous history of not recovering well, even after minor surgery, his specialist team are now against operating.
“During our last visit we met with all the surgeons at the same time and at that meeting the plastic surgeons explained to us that they had put Shane’s case forward to a panel of 16 plastic surgeons twice to go over every detail for Shane and what surgery would involve,” Raylene said.
“Every single surgeon came to the decision that it would not be beneficial to Shane’s health and they actually didn’t think he would survive the surgery.
“The doctors said it wouldn’t be fair to even try and do the surgery and have Shane, if he even came out of the surgery to start with, have him bedridden for however long it takes to recover.
“To recover he would have to stay still in bed the whole time and it could be weeks or even months.
“Because it is such a big operation, the biggest fear is that they were 100 percent sure that he would get an infection just because of the severity of the surgery, and the fact that they need to use foreign bodies to help fix him and they just felt he wouldn’t survive an infection.
“They said to let him enjoy life the way he is now, he’s happy and we just stay on top of his pain because he is in pain every day.
“We are not giving up hope; we are just living day to day and praying for a miracle.
“I pray all the time for a miracle and we found out he wasn’t a candidate for a bowel transplant because they had to remove all of his large bowel and we were hoping he would be a candidate for that but he wasn’t.
“I just keep holding out hope but he seems to keep getting worse and weaker.
“However, he’s a very happy boy and he’s excited because tonight he’s going out tenpin bowling with his friends.”
Raylene said she couldn’t put in words just how much she wanted to thank the community for the continued support.
“I want to be able to do everything I can to make Shane’s time here the best I can and fill our days with memories,” she said.
“We would love nothing more than to fill Shane’s time with experiences for us all to remember and allow Shane to try things he’s never done before or thought to be possible.
“I want to break all the boundaries and believe that everything is possible for Shane to try.
“His siblings have travelled this road with him and I think that doing all these positive things with him will also help them.”
Raylene described her son as an amazingly strong young man with a passion for life who loves music, dancing and his football.
“All of his medical problems aside we wouldn’t have Shane any other way,” she said.
“He has shown us what true love feels like and is a ray of sunshine to everyone’s day.”
The family still have money left over from the fundraiser last year which they have put aside for a holiday.
“We had planned to go on holidays a few times but we had so many hospital appointments and we really weren’t allowed to go anywhere until a final decision had been made,” Raylene said.
“We are waiting for Shane’s brother, JJ, to finish year 12 at the end of October and then we plan on going away hopefully on our holiday to Queensland.”
Shane is looking forward to visiting Australia Zoo while in Queensland and told The Free Press his favourite animal is a giraffe.
Raylene said she recently received a beautiful message from Corowa’s Cara Lawson who is organising a raffle through her Tupperware business.
“She asked if it would be ok if she carried out some fundraising for Shane so we could continue doing things together,” she said.
“We can't thank her enough for keeping us in her thoughts and hearts.”
The family have a bank account set up for Shane and for those who would like to donate money the bank details are: Account name: Raylene Finnemore; BSB: 012 590; Account number: 408 383 666 and please place your name as a reference.