From the minute Keenan was born, his mum Pixie knew there was something terribly wrong with her beautiful boy. It took five days for Keenan to open his eyes and he would constantly cry in pain.
For several months Pixie went back and forth with Paediatricians begging them to run tests on her baby boy. It wasn’t until Keenan was three and half months old did his mum finally get some answers.
Keenan constantly cried in pain and was struggling to breathe. After a week of being hospitalized and then discharged, he was once again taken to hospital assuming for treatment of Bronchiolitis where X-rays and tests where done. Doctors found Keenan had an abnormality with his bones and they needed to investigate further.
Keenan underwent extensive X-rays, CAT scans, ultrasounds, blood, hearing and eye tests. After what felt like forever, Pixie was told that her son had been diagnosed with an extremely rare genetic disease called Malignant Infantile Osteopetrosis. At Keenan’s stage of diagnosis only two other children in Australia had been diagnosed with the disease.
Malignant Infantile Osteopetrosis is a rare congenital genetic disease characterized 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.
Keenan’s chance of survival was only 50% provided he could receive a bone marrow transplant.
Unfortunately, no immediate family were a match for the transplant due to an adoptive background, (the other 2 previous children with MIOP having a family member donate) so an international search for a donor commenced. As they searched Keenan’s condition continued to worsen. After nearly two agonising months of searching & constant admissions to hospital, a donor match was located in the UK.
Keenan was re-admitted into hospital to start the crucial preparation process for the bone marrow transplant. The transplant was incredibly traumatic for Keenan leaving him in horrific pain and suffering from graft versus host disease.
After a few months the family were told things were finally going right and baby Keenan could leave hospital.
Once home Pixie expected Keenan’s condition to continue to improve, unfortunately, it was only a matter of days before things went terribly wrong.
Keenan suffered from internal bleeding and was rushed back to hospital where he received daily platelet and or blood transfusions, was placed on oxygen and received morphine to help ease his pain.
The pressure in his tiny fragile skull became so bad that doctors had to perform an emergency surgery to remove 10cm of his occipital bone just to relieve the pressure and a shunt was implanted to help drain fluid.
“I wished every day that I could take away his suffering and take it on myself”
After yet another month in hospital, Pixie was given the most amazing news. Her baby boy had defied all odds and beaten his disease; the bone marrow transplant had been a success!
But, Pixie and her family were only able to share several days of joy with Keenan, when suddenly things took another devastating turn. The excess fluid in his body and brain was so severe that Keenan lost consciousness before being rushed to the ICU where he was incubated after 5 cardiac arrests.
Devastatingly, Keenan lost his fight the next day passing away in his mother’s arms. He was only eleven and half months old.
Keenan spent 7 out of his 11 & ½ months of life in hospital. Despite the horrific pain that he endured everyday battling to stay alive, Keenan managed most days to give the people he loved a smile and even a giggle!