“Boston is honestly the strongest and most resilient little man we know, I’m so proud to be his mum.”
Amanda says despite everything he endures, her youngest son Boston is full of energy and happy-go-lucky. He loves music, Auskick and playing with his two older brothers Camden and Nash.
When he was born, Boston was small, but otherwise a healthy baby. However, within weeks, he developed gut issues and underwent his first abdominal surgery at just 28 days old.
Following further major surgery just before his first birthday, doctors discovered how severe his bowel disease was.
After countless scans, biopsies and tests, Boston was diagnosed with a Redundant Sigmoid Colon, gut dysmotility affecting his digestive system and bladder disorders. He also has autonomic nervous system dysfunction, a genetic disorder called KMT2C, Autism, ADHD and is classified as 2E.
“Boston’s medical journey hasn’t been easy by any means. It’s an ever- changing journey with constant appointments with his medical team, surgeries and hospital admissions,” Amanda said.
During a six-week hospital admission, Boston suffered life-threatening complications where he suddenly stopped breathing. Every subsequent surgery Boston faces now comes with added risks and concerns. He has also developed an allergy to different pain medications further adding to the anguish of every procedure.
Boston has had large sections of his bowel removed and undergone many gruelling hours- long surgeries. Over the years he has spent months on end in hospital, with long periods isolated in intensive care.
By the time he turned six, Boston had endured over 30 surgeries.
Amanda said the emotional and financial strain has hit the family hard. She has had to change her work arrangements to be by Boston’s side in hospital while also juggling caring for her other sons Camden and Nash.
“The hardest part for Boston is the months in hospital away from his brothers. The physical pain he endures is tough on him as well as the emotional trauma of it all,” she said.
Throughout the years of pain and sadness, Starlight has been there along the way bringing moments of fun and happiness.
Amanda remembers first meeting Captain Starlight in hospital when they came and sang songs to Boston when he was a baby. Boston loved their daily ward visits which always brought a big smile to his face.
“The Captains help break up the day for kids and make hospital less stressful and boring,” she said.
While Boston has missed out on so many activities that other kids his age get to do, Starlight has helped bring him moments of childhood happiness. When Boston was in hospital on his first and fourth birthdays, the Captains helped him celebrate with songs and party games.
When he’s feeling well enough, Boston loves going to the Starlight Express Room to play games of UNO with the Captain Starlights, sing and play the keyboard. And whenever he’s in hospital he never misses the fun of the daily Quiz.
Boston has a permanent end ileostomy, a gastrostomy button for feeding and medication, and a porta Cath which is a central IV access device for nutrition and medication. Every four weeks Boston also needs infusion treatment which takes all day.
Amid so much ongoing stress and worry in their lives, Amanda said Starlight has helped bring them the boost of happiness they need.
“Starlight has helped us create so many wonderful memories. The Captains provide such a positive distraction from everything that’s going on in hospital,” she said.
After attending hospital school for many weeks, Boston was excited to be able to finally start at the same school as his brothers. The Captains even made him a special ‘First day of Kindy’ surprise gift bag!
“Having fun and being able to play helps takes kids away from the reality of hospital life – it’s like a positive reward for all the hard stuff they have to go through. Happiness and laughter really make the world of difference and we’re so thankful to know Starlight is there.”
