1 in a Million condition

Maya was a healthy, bubbly 6 year-old girl with a zest for life. She had an infectious giggle and an angelic smile which would brighten up any room. Chatty and sociable she entertained both children and adults alike.

All this changed when in the early hours of the 6th July 2023, she woke up screaming, we ran to her room to find Maya frantically chewing her mouth. At this point we weren’t sure of what was going on until we saw saliva which then emerged into mouth full of blood. Maya was staring right through us and within moments she fell to her bed. Unsure what was going on we called the paramedics who come to find Maya still chewing her mouth. What was being considered at this stage was that Maya was suffering from an unusual seizure. We ended up in hospital within the hour and this episode continued for 3 hours. Due to the pain and fear and the unknown factors of what Maya was suffering from the doctors had to sedate her.

Maya went through numerous tests for infection/meningitis/epilepsy etc but all tests came back negative. The next morning Maya suffered from the same seizure.

Maya was transferred to Nottingham hospital where she is currently in ICU and is being supported through machines.

11 days after being admitted on 17th July the medical team through trying various treatments and ruling many conditions out have concluded and diagnosed her with a 1 in 1,000,000 chance of ‘FIRES Syndrome’ (Febrile infection-related epilepsy syndrome) This is a very rare epileptic syndrome that strikes previously healthy children aged 3-15 years and has an unknown pathogenesis and few treatments.

We as parents feel hopeless right now as we can’t do anything to bring her back to her bubbly self. We are at the mercy of the one above.

We have set this page up to build a mosque for Maya where it’s most needed with the hope of duas and our intentions that our Maya recovers from this.

If you are able to please donate towards this cause but most importantly we are asking for you to raise your hands and make sincere dua as we are in unknown territories and the power of prayers can change anything.

JazakAllah Khairun