Shano’s liv­ing his life

The Free Press (Corowa) - - FRONT PAGE - BY SARAH DEAN

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.

We are not giv­ing up hope; we are just liv­ing day to day and mir­a­cle.” pray­ing for a

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 day.” sun­shine to every­one’s

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.

Shane get­ting into the spirit of the ‘White Christ­mas’ with a snow­man. Shane with the rest of his fam­ily in­clud­ing step-dad Josh, sis­ter Annabelle, 3, mum Ray­lene, and broth­ers JJ, 17, and An­to­nio, 6, en­joy­ing a ‘White Christ­mas’ in their own backyard. Shane Kemp, 22, is liv­ing life to the fullest.

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