Giralang boy, Divyank Kc, who turns three next month, loves aeroplanes, Emma from The Wiggles and pancakes and ice cream.
His mum Sabina says he is full of life.
"Oh my God, he is very, very cheeky," she said, with a laugh.
"He loves joking around with us. I can't believe a boy who has been through so much, has this much character."
Divyank has been diagnosed with Crouzon and Pfeiffer syndromes. His skull bones have prematurely fused, preventing the skull from growing normally and affecting the shape of the head and face.
Divyank has had 14 surgeries in his short life, mainly to relieve the pressure on his brain. His hearing has also been affected by the condition. He has difficulty breathing, which resulted in a tracheostomy surgery in September.
Thirteen of the 14 surgeries have been with specialists at the Women's and Children Hospital in Adelaide (the first, when he was just four months old, was at Westmead Hospital in Sydney).
Sabina remembers flying to Adelaide for that first surgery with Divyank. Her husband Sanjiv, who works in finance for the ACT Education Department, was unable to accompany them and the trip was daunting.
"It was my first time in Adelaide, I didn't know anyone, no family or friends," she said.
The social worker at the hospital made a referral for her to get accommodation in Ronald McDonald House in Adelaide.
"I told her, 'I don't need a bed, I won't sleep anyway, just give me a couch'. Anything,," Sabina said, remembering feeling desperate and overwhelmed.
She got much more than a couch. Ronald McDonald House became a home away from home for Sabina and later Sanjiv over a year as Divyank had multiple surgeries.
"I walked in there and my mind is blowing," Sabina said, of her first visit to Ronald McDonald House.
"It was so clean and so nice and so welcoming. It was like an angel had been sent by the gods. I almost cried. It was so beyond my expectations."
The family had the use of their own room and shared the kitchen and laundry. Sabina said the staff and volunteers were amazing.
"They instantly make you feel at home with their natural friendliness and kind behaviour," she said.
"When my husband, the only breadwinner of the family, couldn't be with me all the time due to his job commitments in Canberra, Ronnie Mac became our second family home."
Volunteers would also make meals for them. "Some days you are so stressed and not in any mood for anything but then all of a sudden someone makes you a nice meal and it just makes all the difference," Sabina said.
McHappy Day on Saturday will be raising money to help more children like Divyank and their families.
This year's McHappy Day is aiming to raise more than $5 million for Ronald McDonald House Charities, which equates to more than 31,000 days of supporting families with seriously ill children across Australia. One hundred percent of profits from McHappy Day go directly to the charity.
"Ronald McDonald House has been a massive support for our family in our toughest time. We got helped, mentally, physically and financially. I can't imagine Divyank's medical journey without Ronald McDonald House," Sabina said.
Divyank and his family, meanwhile, returned home from Adelaide only two weeks ago. It's hoped they won't be back for a while. Divyank is not due to have more surgeries until he is seven or eight and then again at 14 or 15, when he will have major facial reconstruction.
With no flights to Adelaide scheduled in the near future, the only aeroplane Divyank will be seeing anytime soon will be on his third birthday cake.
Ways to donate to McHappy Day:
- Buying a Big Mac from McDonalds - $2 from every Big Mac sold on November 16 goes directly to RMHC .
- Picking-up a pair of $5 silly socks or a Helping Hand for $2, $10 or $50 .
- Making a gold coin donation via the McHappy Day Bucket Brigades.
