Happy birthday, Jake – from all of Orange!

Happy Birthday, Jake, Orange City Life’s number one fan!

Jake Butwell might not be having the birthday event his mum planned for his 30th but, from everyone here at OCL, have a great day, mate!

Born with Prader-Willi Syndrome, Jake is one of the many who have found the loss of routine during lockdown harder than others.

Mum Debbie says, however, that the highlight of his week remains getting his beloved Orange City Life each Thursday.

“Orange City Life has been the only consistency, the only certainty, through all this – and it’s the only thing that has kept him going,” Debbie said.

“Jake celebrates his 30th on Saturday, September 25, but we can’t really do anything basically because of the uncertainty of lockdown,” Debbie said.

“We had a party planned with 30 people booked for ‘Eddies’ at Canowindra, we were going to have family and friends from Queensland, Canberra, Newcastle, and local, but I had to tell him the truth that they just can’t come now.”

Mum had planned a full weekend including a party and a range of his other favourite activities.

“We were going to start on the Friday night with putt-putt golf and then ten-pin bowling, Jake’s favourite.

“But we had to make the decision about six weeks ago, we couldn’t just let it get close to the date and then cancel then, he wouldn’t understand,” Debbie explained.

“We were going to go back to Cowra for his party, and then the Sydney lockdown came, and we thought we’d have a family gathering, and then that got cancelled; and then just his father and me and his grandparents, and now we can’t even do that.

“He loves his nieces and nephews. I have four other children and they were all coming. It hasn’t hit him yet and Jake’s only just starting to understand.”

Jake though is taking his disappointment like a man with the long, state-wide lockdown last year the only time that his love-of-life has wavered: “There was a time when it stopped me for a while from getting my Orange City Life, I didn’t like that,” Jake explained.

“Jake and I moved over here from Cowra three-and-a-half years ago and it was hard when I was in Cowra.

“We only picked up a copy if we were over here for shopping or other appointments,” Debbie said.

“I worked over there for the no interest loans scheme for the Josephite Foundation,” Debbie explained.

“Jake was so excited when we moved over here, that we were able to get it so easily, before then, he only saw it sometimes.

“But I love it over here, there’s so much more for me and Jake, we both like Orange,” Mum said.

With underlying autistic tendencies, Jake loves OCL for its regular columns, and puzzles and quizzes, baby and social photos, and even the “Fond Memories” section.

“I love the births and the ‘Memories’ and the pictures and the photos of the babies especially,” Jake said. “Jake has a fascination with collecting names and dates, he writes them down,” Debbie explained.

“I take out what I want, but sometimes I get too many copies... sometimes I get home, and I’ve got to get five copies of the paper each week,” Jake said guiltily.

Mum occasionally gets to look at Orange City Life herself and enjoys our unique reader feedback sections: “I love having a look at the Thumbs Up and the Thumbs Down.

“I also like the variety of different articles that it has, the word puzzles and the quizzes also.

“It is full of so much information and to be able to pick it up anywhere you want, makes it great,” Debbie said.

Jake, when not in lockdown, works at Wangarang Industries, a job which Debbie says is great for her son and which offers him a centred routine.

“I do a lot of different things, removing labels from bottles, moving stuff... when we get new jobs, we need new training, so it’s good,” Jake said.

Jake’s condition, often initialled as ‘PWS’, affects about one in 15,000 people and is usually discovered soon after birth.

“It’s a random and genetic disorder that affects the hypothalamus. It impacts their hunger, their body temperature, the control of hormone production,” Debbie explained.

“These then flow on to their behaviour, their learning, their mental and physical health, and social and community inclusion.”

One of the typical attributes of those with the condition is a lack of dietary control, with no effective “off switch” for their appetite, meaning food has to be carefully controlled.

Keeping Jake busy is central to his health, with he and Mum keeping up a hectic schedule to stay active and healthy.

In this theme, Jake is also a member of the Orange Lions Club and volunteers at events like the Driver Reviver during holidays and for their other charitable works.

Jake also loves Orange’s Cook and other parks for the animal life, both tame and wild: “I love to wander down to see the birds, but I mostly like dogs, they like me, and I like them,” he added.

Almost more than he and Mum enjoy their latest Orange City Life... “I like it, but no-one loves it more than Jake,” Debbie said.