Maysaa is five years old. She loves strawberries, ice cream, unicorns, rainbows and all things sweet! She also loves her two older brothers - and bossing them around even more!
During the lockdown, Maysaa was diagnosed with stage 4 high-risk neuroblastoma, a rare aggressive childhood cancer that has a 40-50% chance of long-term survival at diagnosis.
Maysaa enrolled on the DFMO study in Charlotte in August 2022 to continue her treatment, which was made possible by the community of supporters who helped raise the £106,000 needed.
During lockdown, Maysaa became very clingy and was off certain foods. By March 2021, her parents noticed that her lips had begun to turn blue, and her tummy was distended.
They took her to the GP, who referred Maysaa to a cardiologist. Not satisfied with the outcome, Maysaas parents decided to take her to A&E. Following many scans, poking, prodding and tubes she was diagnosed with stage 4 high-risk neuroblastoma, an aggressive childhood cancer that has a 40-50% chance of long-term survival at diagnosis.
Everything happened so fast and was completely unexpected. We were in a state of shock, we were devastated, and our lives were turned upside-down within a matter of hours, says Osama and Ihssane, parents of Maysaa.
Maysaa had five rounds of chemotherapy with many hospital admissions for high fevers in between. As Maysaa is immunosuppressed, these fevers could not be ignored. She also underwent an extremely risky surgical procedure to remove as much of the primary tumour as possible. It took the surgeons eight long hours, and Maysaas family say that it was one of the hardest days of their lives.
Once Maysaa had recovered from surgery, she had a round of high-dose chemotherapy. She remained in isolation whilst her parents took turns to care for her. Whilst in isolation, Maysaa suffered from very bad mucositis, nausea and diarrhoea. She was on a constant drip of morphine due to the extreme pain she was in.
Maysaa then had radiotherapy and immunotherapy to complete her frontline treatment in the summer of 2022. End of treatment scans showed no evidence of disease, and she enrolled on the DFMO study in Charlotte in August 2022.
Watching our beautiful baby girl go through some of the most extreme forms of treatment and the side effects they cause has been torturous and tremendously difficult, but the patience and grace with which Maysaa bore them was truly inspirational, say Osama and Ihssane.
Maysaas family started fundraising for £106,000 to fulfil their wishes for Maysaa to access the DFMO study in Charlotte after frontline treatment, with the hope of keeping the cancer away. Thanks to the incredible support the campaign received, Maysaa was able to enrol on the study in August 2022.
Maysaas campaign remains open in case she needs potentially life-saving treatment in the future not available through the NHS, which could cost hundreds of thousands of pounds.
There are many ways you can help Maysaa: by making a personal donation; by sharing and following her story on Facebook or Instagram ,holding a fundraising event; getting sponsored to take on a challenge.
To donate by text, send MAYSAA followed by any whole amount up to £20 to 70085. This will cost your donation plus your standard network charge. It wont matter if you leave a space before the number, if you include a £ sign or whether you use upper or lower case.
Funds raised will go towards helpingMaysaaand her family. IfMaysaano longer needs the funds or is in remission five years post the end of successful treatment, the funds will be used to support other children and families affected by neuroblastoma through our activities. For children with high-risk neuroblastoma, like Maysaa, the survival rate is much lower than other childhood cancers. Upon relapse, this rate reduces even further.
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