Alyssar's story


Alyssar in wheelchair12-year-old Alyssar and her family have had to deal with hospital and treatment since she was diagnosed with Sickle Cell disease at just two years old.

The genetic condition causes red blood cells to form into a 'sickle' leading to episodes of extreme pain called crises. At the time of diagnosis, the family felt shocked, scared and helpless.

Alyssar's condition means she has an increased risk of stroke, chest infections and other organ issues. She can need hospitalisation with little or no warning and has been admitted to hospital nine times in one year alone. Alyssar's lifelong dream is to travel overseas and since her diagnosis, the family have not been able to help her realise this dream.

Alyssar with siblings and in hospitalIn 2017, the severity and frequency of these pain crises meant Alyssar spent most of the year at Sydney Children's Hospital. It was heartbreaking being away from her older brother Jamal and younger sister Sara.

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It was just crisis after crisis and it felt like we were in hospital all year. We were away from our other kids for weeks at a time, and although we have great home support, our lives felt all over the place.
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Alyssar's mum, Najah

Doctors told the family their only hope for Alyssar's condition was a bone marrow transplant.

Protective older brother Jamal hoped he could be a match instead of his youngest sister, but tests showed that Sara was the perfect match.

"We explained everything to Sara and she said really wanted to do it 'to make her big sister feel better'," Najah said.

At just five years old, Sara gave her sister the most precious gift of all.

Bone marrow extraction involves inserting a needle deep into the bone and requires numerous painful blood tests.

Alyssar and her sister

Thankfully, the transplant was a success and the sisters now share an extraordinary bond. After seven months off school, Alyssa slowly returned. But her mum says spending so much time in hospital takes its toll.

"There are times when I feel her illness pulls her into her shell a bit," Najah says. "But on the positive, she's very strong and brave."

While their lives are filled with so much fear and uncertainty, Starlight helps bring the family vital moments of happiness.

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Starlight has had a huge impact on Alyssar. Captain Starlight is the one thing she looks forward to in hospital. When she was younger, that 'carrot' is how we'd bribe Alyssar to come to hospital. It helps make every visit a little easier.
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Alyssar's mum, Najah

The Starlight Express Room helps make hospital a lot brighter for Alyssar and distracts her from the pain of her illness. When Jamal and Sara visit, they love going to the Starlight Express Room to play together in a fun 'non-hospital-like' space.

When Alyssar is not well enough to go to the Starlight Express Room, she joins in the fun through Starlight TV, especially enjoying participating in the quizzes to help her cope with isolation.

Alyssar with Captain StarlightNajah says as well as the physical pain her daughter deals with, the hardest part for Alyssar is missing family celebrations and joining her friends on school camps.

Sadly, over the years, Alyssar has had to be in hospital at Christmas. Najah said one Christmas in particular is etched in her mind forever.

"Alyssar was very sick and we weren't sure she would make it, she was in hospital for four long weeks. It was terrifying for our family at what should have been a happy time but thankfully she was OK in the end."

Despite dealing with so much pain, Alyssar still enjoyed moments being connected to the fun and games of the Starlight Express Room, which gave her a vital break from everything she was going through.

Her mum said without Starlight in hospital, it would have made everything 'ten times worse'.

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Starlight turns a negative into a positive. With Starlight, kids can be kids and not have to worry about anything more than Captain Starlight's bad jokes!
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Alyssar's mum, Najah

And to Starlight supporters, Najah and Wassim said, "Thank you. Without your support there would be no Starlight and without Starlight, sick kids wouldn't have any relief from the painful reality of what they are fighting."

Alyssar and family

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