Alyssar’s story – the gift of hope

One very hot day back in November 2010, two-year-old Alyssar was having an off-day. Usually bright and cheeky, the toddler was crying and grizzly.

Her parents, Najah and Wassim thought she was over tired but when she was still crying and complaining of stomach pains at 10pm, they grew increasingly concerned.

After a trip to the local medical centre, who referred them to their local hospital for a blood test, they were still no closer to having an answer.

The next day Najah and Wassim received an urgent call from the pathology lab telling them to pack a bag and go to the children’s hospital straight away. They had found something in Alyssar’s blood.

Upon arriving at Sydney Children’s Hospital, Randwick the family was met by Tracey O’Brien, Director of Kids Cancer Centre at the Hospital, and a team of specialists ready to look after Alyssar.

“Even though we were so scared and confused, seeing Tracey and her team immediately gave us a sense of relief and comfort. She was so calm, reducing our fears by helping us understand Alyssar’s condition,” said Najar

Alyssar was diagnosed with sickle cell disease, where red blood cells are distorted into a sickle, or crescent, shape. These cells can block blood flow, leading to episodes of intense pain (called pain crises), infections and delayed growth. It can also have long term effects on Alyssar’s organs, like her spleen, lungs and kidneys.

During her initial treatment of a blood transfusion, antibiotics and pain killers, Alyssar stayed in the Hospital for two weeks. Her family learned more about her chronic condition, so when discharged they knew to monitor their little girl, to keep her hydrated and well rested and to return to Hospital if she was in more pain.

“As a parent to an ill child, we’ve had our ups and downs. You try and be strong but there are days when you just break down as the reality overwhelms you. But we’re still grateful. We have an extended family, cousins and uncles who gathered around us, supporting us day-in day-out. We also had our second Hospital family,”

As the years progressed, the Hospital staff certainly became a second family for Alyssar and her family. In addition to regular check-ups, every year she’d have a few ‘pain crises’ and would come in for treatment.

Alyssar even spent Christmas day in Hospital.

“My family tradition, since I was a child, is to go to the beach on Christmas day with all the extended family. When we were in Hospital, we obviously couldn’t do that, so the staff made sure Christmas had such a joyous and festive vibe. They went above and beyond, with decorations and gifts. It turned another day in Hospital into a very special experience for Alysaar, and one that we’re grateful for. Moments like these are priceless,” said Najar

In 2017, after years of being closely monitored with regular Hospital visits, Alyssar’s condition took a turn for the worse. The nine-year-old had over nine admissions. One crisis near her lungs was particularly bad, causing severe pain, resulting in a collapsed lung and a two-week Hospital stay. As Alyssar’s condition worsened, she was also at a high risk for stroke.

Alyssar’s Hospital team and her family were considering a bone marrow transplant, which is currently the only cure for sickle cell disease.  But only a small number of people who have sickle cell disease can have the transplant. Luckily Alyssar’s younger sister, Sara was a perfect match!

In April 2019, Alyssar was scheduled for a bone marrow transplant. The whole family were nervous but excited at the same time, hopeful that this procedure would help their little girl have a healthy future. After a few weeks in isolation, the day they had been waiting for arrived. Even six-year-old Sara woke up excited to help her big sister.

“It made it easier that Sara was excited to help. Even the anaesthetist said that she was the happiest child he’d ever put to sleep. Sara’s excitement made everything relatively easy. Knowing she was doing well and being looked after by people I trust meant I could focus on Alyssar,”

The transplant was a success and despite having side effects from the pre-transplant chemotherapy, Alyssar’s condition improved. After seven months off school, she was able to return for a few hours a day. She now comes into Hospital once a week for check-ups.

Her whole family are ecstatic as Alyssar is enjoying being at home, seeing friends and going to school. She loves dancing and making videos with family and friends.

“My hope for Alyssar is that she can have a normal life and have fun, just like other kids.
I want her to not be in pain anymore and to live her life, not in fear but in hope. I just want her to be free,” 

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How you can get involved

Sydney Children's Hospitals Foundation raises funds for Sydney Children's Hospital, Randwick , The Children's Hospital at Westmead, Bear Cottage, the Newborn and Paediatric Emergency Transport Service (NETS NSW) and Kids Research