Henry’s mum Melissa had to ask doctors the question no parent ever wants to ask.
“How long will my little boy live?”
Henry had not yet turned one.
Just after he was born, Henry was diagnosed with X-linked stapes gusher syndrome, meaning he has bilateral sensorineural profound deafness. He needed ongoing screening tests and was then cared for at a specialist hearing clinic at the Children’s Hospital.
At seven months old, Henry’s parents noticed he seemed lethargic, was pale and vomiting - nothing like their usual cheeky, happy boy. Growing more concerned when he wasn’t eating or drinking, Melissa and dad Craig took him to their local hospital.
Despite being sent home soon after, Henry’s condition was sadly still not improving so they returned to hospital the following day.
The next few hours were a blur. Henry was immediately airlifted in an induced coma to the paediatric intensive care unit at the children’s hospital.
Doctors diagnosed Henry with Atypical Haemolytic Uremic Syndrome (aHUS) - an extremely rare, life-threatening, progressive disease for which there is currently no known cure.
“We were completely lost, none of it made sense to us and it was extremely overwhelming and scary.”
“From that moment, he had a flurry of doctors coming in and out constantly, 1:1 nursing and hundreds of tests. He was started on life-saving infusions,” Melissa recalls.
Since the diagnosis, the family has had to learn to be apart for long stretches of time. Henry has frequent trips and stays in hospital - often confined to his ward. Henry also has gross motor delay and has some cognitive delays which means he sees a variety of therapists.
The separation and time in hospital is extremely hard on everyone – especially for Henry’s older brother Lachlan aged two.
“It’s hard for our other son Lachlan too, seeing Henry and I coming and going and him needing to be shipped off to grandparents and babysitters while we’re in hospital. I feel very guilty. I’m not able to work as Henry requires full time care,” mum said.
Amid their long dark days in hospital, Starlight has helped bring moments of light and happiness. The Captain Starlights visited Henry regularly, bringing bubbles, ukuleles and fun helping to ease the loneliness.
“Starlight has been the breath of fresh air Henry (and we) have needed whilst in hospital. His face beams when he sees Captain Starlight pop around the corner of his hospital door,” Melissa said.
The family also has to take infection control very seriously as Henry’s immune system is severely compromised. Melissa says they have to be constantly cautious about the activities they choose - that means no daycare, no play centres or big parties for Henry.
“I think the hardest part for Henry is not having autonomy over his own body, and not being able to do all things his big brother can. But he takes everything that’s thrown at him and rarely complains. He’s bright, happy and extremely resilient.”
Henry recently endured a seven week stay in hospital for surgery for a cochlear implant. Sadly, there were complications and Henry ended up with meningitis.
“He’s had some really tricky days, a lot of days sedated and many days without leaving a hospital room except to be wheeled to and from the operating theatre,“ Melissa explains.
“Starlight brings the brightness into the day and gives Henry a break from hospital life without even leaving his room.”
Sometimes Captain Starlight communicates with Henry using Auslan (Australian Sign Language). They also gave Henry his first ever musical experience with a special song made just for him the day he first heard after getting his cochlear implant.
“It makes my heart happy to see Henry be able to have a smile on his face on some of his hardest days. Without Starlight, that would not have been possible.”
And when Lachlan visits Henry in hospital the boys love going to the Starlight Express Room to hang out together.
“The Starlight Express Room has given us a little sanctuary away from the medical world of the hospital. It’s a place Henry can go and just be a kid and enjoy himself and importantly meet and play with other children.”
Henry will need ongoing infusions to manage his condition throughout this life but Melissa said they feel lucky that he should go on to have a typical life with the continuous treatments.
”An enormous thank you for your support. As a mum of a young child with a life-long medical journey ahead of him, it really helps to know that Starlight is there to help walk Henry through his hard days by giving him that little bit of fun and happiness he needs.”
