BiographyMy daughter Saniyah is 5. She was born healthy and well.
Saniyah's seizures started once she had her first injections at 4 months old.
It took 3 years of genetic testing to find her gene mutation. This time we spent most of Saniyah's early years in and out of hospital unable to do much. Leaving the house was very difficult and still is. After Saniyah's injections we could no longer bath her without a seizure. We could only wipe down areas of her body with a cloth without putting her fully in water. We could not let her get hot or cold and she would constantly be in hospital for days at a time every week. We spent more time in the hospital than at home.
Saniyah has been diagnosed with a rare genetic disorder which causes a catastrophic form of epilepsy, Dravet syndrome. This condition unfortunately is drug resistant and does not have a cure.
Dravet Syndrome is the most severe group of conditions known as SC1NA seizure disorders. Saniyah's symptoms include various seizure types; tonic clonic seizures, partial seizures, focal seizures, daily absence seizures, daily myoclonic clusters and jerks and nocturnal seizures throughout the night with breathing abnormalities while she sleeps. Saniyah has frequent medical emergencies with prolonged status seizures that require hospital admission and can lead to life threatening complications. Saniyah is also at a greater risk of SUDEP (sudden unexpected death in epilepsy).
Dravet syndrome causes Saniyah to have a disruption to her autonomic nervous system which gives her difficulty regulating her body temperature, heart rate and blood pressure.
Saniyahâs immune system is also affected; she suffers chronic infections.
These infections increase the seizures and the hospital stays. A temperature, tooth or growth spurt admits her to hospital with clusters of seizures putting her life at risk. Saniyah has seizures when she is well and they increase when she is sick.
Everyday daily triggers can also increase them, this is something we must manage every day. Saniyah is sensitive to loud noises and temperature changes, getting too hot or cold, even temperature changing too quickly. We must check her temperature regularly. There are times she is unable to leave the house for long periods due to her health being at risk. Over excitement, pain, water activities (including baths), change of routine and tiredness are all factors that bring extra risk of seizures and hospital stays.
Dravet syndrome is a spectrum disorder so other symptoms include loss of motor skills, intellectual disability, severe challenging behaviour (Autism, ADHD) speech impairment and difficulty with walking and movement in later years.
Saniyah currently has global development delay, autism, speech delay, along with balancing and mobility issues. She is currently taking 3 anticonvulsant medications with 1 rescue medication, but her condition is drug resistant, and she continues to have frequent seizures and hospital admissions. Her quality of life is very limited from the side effects of these medications. They affect her development and behaviour. Saniyah is tired from all the medication. She cannot manage to do normal activities a child her age would do. For example, Saniyah is now in mainstream reception class waiting for a special school placement. Saniyah constantly misses days due to seizures and illness and currently sleeps half of the school day which is having an impact on her learning.
The impact of her health has greatly affected our family life. Saniyah's 9 year-old brother unfortunately misses out on being able to go out and enjoy a typical childhood. He must unfortunately stay at home with us when she cannot leave the house.
I have had to give up my employment to care for Saniyah as she has extremely high care needs and must be supervised 24/7 to keep her safe. As a family we are constantly living in fear and on edge that we could lose our child to this terrible disease at any time a seizure strikes with bedtime being the biggest fear in case we sleep through a seizure or her breathing stops during sleep.
Despite all the suffering our amazing Saniyah is a loving happy 5 year-old, who makes everyone around her smile. Those that spend time with her can see her personality shine through and enjoy being around her. We hope one day they find a medicine that can help her have more of a normal life pain free.
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