1 week Ago By Janine Graham
Steve and Angel Everett are pictured with their sons. Four-year-old Kyrie, far left, will be a bone marrow donor for his almost eight-month-old brother Kingston who is living with juvenile myelomonocytic leukemia. Picture by Adam McLean Call it intuition, call it advocating for your tiny newborn, or even unconditional love - whatever it is, Angel and Steve Everett have it in spades.
Subscribe now for unlimited access . Login or signup to continue reading All articles from our website The digital version of Today's Paper Breaking news alerts direct to your inbox All articles from the other regional websites in your area Continue The Wollongong couple was adamant little Kingston was unwell just months after his arrival on February 21 this year. They were right.
It just took multiple GP visits, almost as many trips to the ED at Wollongong Hospital and paediatricians before specialists at Sydney Children's Hospital diagnosed juvenile myelomonocytic leukemia (JMML). It's a condition that affects just one or two people in every one million. The Everetts' little boy is very special.
So, too, is their eldest, four-year-old Kyrie. Because it is cheeky Kyrie who will donate his bone marrow for the transplant Kingston will have next month - all things being equal. Not much has gone the family's way this year yet still they remain upbeat and grateful for the support that has lifted them when they needed it most.
Diagnosing Kingston's condition, which is curable if treated early enough, took months. Angel knew her son's constant congestion was not right: "When he was just three weeks old we saw a lactation consultant as he wasn't drinking. He had a tongue tie that was snipped and it was then she said he was congested.
" That prompted the first of many visits to the GP, but little changed for Kingston. Angel Everett with her almost eight-month old son, Kingston. He's suffering from a rare form of juvenile leukaemia.
Picture by Adam Mclean There was a constant runny nose, difficulty sleeping and even moments at night when Maree feared he'd stop breathing. It wasn't until abnormalities in a blood test were identified at three-and-a-half months that investigations ramped up. At four months, Kingston had his first surgery.
The hernia he was born with was dealt with, but more importantly, with his blood "still out of whack", Angel said, he was formally referred to the haematology-oncology team at Sydney Children's Hospital . Then, in September, the family finally received the one-in-a-million diagnosis. It meant days in hospital at Randwick and divided the family - Angel stayed with Kingston at Randwick while Kyrie and Steve returned to Wollongong daily.
The family, who lives under the shadows of Wollongong Hospital, were not eligible for supported accommodation at Ronald McDonald House as they were 4km shy of the 100km distance requirement. Financial impact Both work at Wollongong Hospital, Steve on the wards and Angel as a nurse. Their workmates started a GoFundMe page to help with the financial burdens, and for that, the couple are eternally grateful.
As they also are for the medical care at Wollongong and Sydney. "The good thing is there's a cure," Steve explained, "and that involves a bone marrow transplant which will come from Kyrie." The procedure will mean at least another two-month hospital stay to ensure there's no rejection.
"The success rate for the transplant is 70 per cent but there can also be another round of transplantation if necessary," Angel said. "But for now, I think we'll pray it'll work in the first round." In the meantime, the family continues its regular trips up the M1, grateful to their family, friends and colleagues for the support.
"There are many ways people can help," Steve said. "But nothing beats blood and plasma donations." Wollongong's Lifeblood Centre is at 45-53 Kembla St.
Share Facebook Twitter Whatsapp Email Copy Janine Graham Illawarra Mercury Deputy Editor Onetime sports reporter, chief-of-staff, editor and national digital news editor.Email me: janine.graham@austcommunitymedia.
com.au Onetime sports reporter, chief-of-staff, editor and national digital news editor.Email me: janine.
[email protected].
