funding for life changing medication

Our 5 Year-old Daughter Saniyah Stagg has been having seizures since she had her first injections at 4 months old. She has been diagnosed with a rare dominant de novo genetic disorder which causes a catastrophic form of epilepsy, Dravet syndrome. (This is not heredity just a chance spelling mistake when cells split at conception a rare disease 1 in 40,000 children are born with). This condition unfortunately does not have a cure!

Dravet Syndrome is the most severe group of conditions known as SC1NA seizure disorders. Symptoms include varied 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.)

Saniyah has disruption to her autonomic nervous system which gives her difficulty regulating her body temperature, heart rate and blood pressure. Saniyah's immune system is not the same as an average child due to her mutation she suffers chronic infections. 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. Saniyah 

also has daily triggers that can 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 will bring on a seizure. We must check her temperature regularly. There are times she is unable to leave the house for long periods of time 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.

Saniyah 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 also affects her 9 year-old brother who 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.

We have tried countless medications to try and give Saniyah seizure control without success. We would like to continue to take Saniyah to a private clinic to access more advanced medications options and behaviour therapies which are currently not available through the NHS. This gives Saniyah a chance of better seizure control and a better life.

Myself 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.

We are also hoping to

raise funds to help

keep saniyah safe in our home. I have been waiting 4 years for a safe sleeping area for saniyah so she can have space for a specialist bed and equipment while she sleeps. Also a wet room to make bathing safer and more manageable now she’s becoming to heavy for me to pull her out when she has seizures in the bath. The local council refuses to accept a disability facilities grant from the government because it does not cover all the costs to build the extension needed for our daughter to have a safe sleeping area and wet room downstairs.

The need for a downstairs living area would allow space for a bed to fit the medical monitoring equipment we so desperately need while she sleeps. I currently must rely on hearing or feeling when her tonic clonic seizures start but this is not full proof. Saniyah’s focal seizures are silent and affect her breathing this puts her life at risk every night we are without a bed with proper alarming equipment. I am scared to go to sleep and constantly on edge for fear I could sleep through one and not administer the rescue medication. We only have space for a cot mattress to fit on the floor with no space for a bed or medical equipment. Through the night is the biggest worry for us as all we have are our eyes and ears to ensure she is still breathing.

Saniyah must be lifted in and out of the bath and held throughout bath time due to headbutting the sides and turning the taps on risking a temperature change and the risk of drowning from a seizure. I have been told we will have to wait 6-7 years for a property that will have space for a wet room and a bedroom downstairs to keep her safe.

After a seizure, Saniyah can become immobile for days, everyday she is growing bigger and heavier for us to carry around. it’s becoming very difficult to lift her up and down the stairs to use the toilet when she becomes to tired or to weak for the stairs for hours and days at a time.Without the space we desperately need downstairs, her quality of life will not improve and she will

never gain independence for simple

tasks like using the toilet.

On Saniyah’s “good” days, she 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 enjoys being around her. We want more of these days to continue as a family and would want more than anything to know she can have a better life as she grows.

We are trying to raise funds to take Saniyah to a private clinic in London for medication and behaviour therapy with the possibility of some more advance treatment to give her a better quality of life. As we all know this kind of private care comes at a cost currently in excess off £400 per week which I and many over family's with Dravet syndrome are unable to afford.

I am also trying to raise funds for adaptions to the council property I currently live in, permission granting this would allow Saniyah to have a safe sleeping space and an accessible bathroom facility.