At just age seven Imi has earned a very special bravery award, passed her Level 1 swimming, can cook up a storm with her dad, is learning to write her name, and has made some amazing new friends.
Her infectious laugh, smile and bright personality light up every room.
Sadly, she has also endured over 40 procedures and operations including multiple major brain surgeries, hip and hand surgeries and a bone marrow transplant.
Imi was born with Fanconi Anaemia (FA) an extremely rare genetic disease characterised by multiple physical abnormalities, abnormal bones in arm and thumbs, smaller or missing organs, heart defects, bone marrow failure and a higher-than-normal risk of cancer.
During mum Rachael’s pregnancy, she was told that their baby may have a genetic disorder, but it was only after Imi was about six months old that tests confirmed the diagnosis.
“We were absolutely devastated,” Rachael said. “Given it’s such a rare disease we had to do a lot of research as not many people in Australia have ever heard of it or know what it is.”
Imi lives with multiple complex health conditions. She has a VP shunt to relieve pressure on her brain, organ issues, an intellectual disability, speech, audio and visual delay, ADHD, and a low immune system meaning she’s highly susceptible to viruses and infections.
To manage her health conditions, life revolves around ongoing surgeries and treatments in hospital including countless x-rays, blood tests, CT scans and MRIs.
“We don’t have a routine and always run on how Imi is feeling when she wakes up and plan the day accordingly. We can’t really make forward plans as Imi is sick and in hospital so often,” her mum said.
Being in hospital is scary and overwhelming for Imi who fears every needle. Her mum said it’s also hard on her daughter emotionally being different to other kids and not being able to do the regular things that other children her age are doing.
“Imi doesn’t have the stamina to do all the different activities. We don’t get to socialise very often as we tend to live in our own little bubble to help keep Imi safe and away from germs.”
Amid so much pain and anguish, Starlight has been a bright light for the family.
“The Captain Starlights have been amazing. When Imi was in hospital having a really bad day with dressing changes and IV drips, they came and gave her a bravery award cape and hat. They have always eased her anxiety before her appointments,” Rachael said.
When Imi is in isolation and unable to leave her hospital bed, the Captains visit at the door with funny jokes and songs to make her laugh.
“Without Starlight, hospital days would be very long and boring. Having the Captain Starlights in hospital helps release pain and stress and helps everyone heal and forget about being in hospital for a bit, ” Rachael said.
Imi also loves all activities in the Starlight Express Room especially the arts and craft, gaming and doing the quizzes.
With Imi often missing out on socialising and the family’s world consumed by hospital, her Starlight Wish was the gift of happiness they needed.
Imi and her mum and dad Russell went to the Gold Coast as part of Starlight’s Wish Week to enjoy a fun break away from the stress and trauma of hospital.
What makes Wish Week so special is the chance for families to come together and meet others with similar experiences and enjoy a well-earned week away.
“The wish was beyond our dreams. Imi said it was the “best time ever” and she even celebrated her birthday that week which was the icing on the cake!” Rachael laughed.
Wish Week helped give the family important ‘healing’ time together and they we were able to forget about hospital and simply ‘concentrate on fun and being a family.’
Describing the impact of Imi’s wish, Rachael said “Everything on Imi’s Starlight Wish was so perfect, I have no words! We loved spending time with other like-minded families. Imi made a new best friend, and they talk on video call all the time. We needed to bring our family together for laughter and fun. It healed a lot of pain; it’s just what we all needed and we can’t ever thank you enough.”
