Help Sabreena Beat Diffuse Midline Glioma

 

. ‏اسَّلَامُ عَلَيْكُم وَرَحْمَةُ اَللهِ وَبَرَكاتُه

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We are raising money to save Sabreenas life and help her in her fight against Brain Tumor.

Our world changed on 28th January 2020. My beautiful  younger sister Sabreena was diagnosed with a rare form of brain tumor called Diffuse Midline Glioma.

By this time, Sabreena's condition had deteriorated to such an extent that she had to request special dispensation from her first semester exams.  Sabreena was in her final year studying law at Reading University and was keen to take the bar exams to become a barrister.

Diffuse midline gliomas are extremely aggressive, and are classified as grade IV tumours. As the name suggests, the tumor cells tend to spread out and invade neighboring tissues. Often, diffuse midline gliomas will have grown throughout the brainstem. Due to this, it is inoperable.

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In late December 2019, just after her 21st birthday Sabreena suffered from double vision and loss of balance, which resulted in her being rushed into eye casulty. After a CT scan she was sent home with an eye patch, and told she would be called back for a MRI. On 8th January Sabreena went for her first MRI scan as an outpatient before returning home. By now she was walking assisted and had limited use of her right arm and leg. We received a call and, a few days later, a letter in the post arranging a meeting with a neurosurgeon.

D DAY - On 28th January, after a series of further tests and another MRI scan, we were given the bad news we were fearing. Sabreena had grade 4 diffuse midline glioma. In the space of three weeks it had also increased in size. By now Sabreena was completely immobile and was struggling to speak and swallow. We were told by the doctors they can only offer radiotherapy before they sent us home.  Before starting any radiotherapy they had to undertake a biopsy to confirm the nature of the tumour.  The biopsy concluded she had DMG.

She began her 13 rounds of intense radiotherapy on 24th February.  Alhumdallilah by the grace of Allah her next MRI scan on 7th May showed a slow reduction. During this period we made contact with an amazing family who lived locally and lost their daughter to this illness in March. She provided us with 6 weeks worth of ONC201 (a clinical trial). Sabreena took this drug over the period of April to June this year. Her MRI in August showed a slight reduction again. We believe the ONC201 was the reason for the reductions.

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We as a family are now appealing for your help to raise enough money to provide her with this life saving treatment! Unfortunately, the NHS do not provide support for this drug or treatment.

ONC201 - This is a new clinical drug being tested on people with grade 4 gliomas with the H3 K27M mutant. This drug is available in Germany, and we would be required to travel ourselves to collect in person. The drug costs £4,000 per month and we would be looking for at least 1 years supply to help save her life.  I would like to stress this is not available on the NHS, so we plead for your assistance to help us raise enough money for her to have this life saving treatment.

Jazak Allah for reading this and even if you are unable to donate, please could you share this page with your contacts.

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Organizer

Nafisa Ilyas 
Organizer
Southampton, South East England, United Kingdom
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