From the moment Pixie Keenan held her first born son in her arms, she fell instantly in love.
“There’s absolutely nothing that can compare to holding your newborn baby … it is the ultimate in unconditional love,” Ms Keenan, founder of Miss Pinup Australia, said.
“I felt instantly there was an unbreakable bond between us and an overwhelming amount of joy. But I knew something wasn’t right. I knew it even before he was born – I could just feel it.
“It took five days for Keenan to open his eyes and he would constantly cry in pain.”
For several months, Ms Keenan went back and forth to doctors, begging them to run tests on her baby boy.
At just three-and-a-half months old, Keenan was diagnosed with Malignant Infantile Osteopetrosis, a rare congenital genetic disease characterised by increased bone density due to impaired bone resorption by osteoclasts. Skeletal bone becomes overly dense and brittle causing strangulation to nerves, particularly in the skull.
“At Keenan’s stage of diagnosis, only two other children in Australia had been diagnosed with the disease,” the Parklea resident said.
“I wished every day that I could take away his suffering and take it on myself.”
She said despite the fact Keenan had endured operation after operation, his high spirit shone bright.
“Irrespective to the fact that he was in agonising pain, he could still give you a smile. He had such a beautiful soul and he was a true fighter.
“He is my hero.”
Keenan’s chance of survival was only 50 per cent, provided he could receive a bone marrow transplant.
The pressure in his tiny fragile skull became so bad that doctors had to perform an emergency surgery to relieve pressure and a shunt was implanted to help drain fluid.
Sadly, he lost his battle for life two weeks before his first birthday.
In loving memory of Keenan, Miss Pinup Australia will host the Miss Pinup Jeans for Genes Fundraiser Fair on August 5 at Event Cinemas, Drive In Blacktown.
“This year would have marked Keenan's 18th birthday,” the 48-year-old said. “There isn't a day that passes when I don't think about him.
“A lot of people are unaware of how many children are affected by childhood diseases. We hope this event helps to raise awareness in out community.
“If I can help eliminate childhood diseases by raising much needed funds for the Children’s Medical Research Institute, then other families won’t have to go through what I did.”
- Details: 10am-3pm, August 5 at Event Cinemas, Drive In Blacktown, Cricketers Arms Road, Blacktown. Tickets: $15. Bookings or to make a donation: o-tix.com/event/misspinupjeansforgenes.