A Hitchin mum is fundraising for potentially life-changing medication for her three-year-old daughter, who needs round-the-clock care.
Cheryl Stagg's daughter Saniyah has life-limiting Dravet syndrome, which sees her suffer severe seizures that happen at any time with no warning.
Mum Cheryl is hosting a family fun day at The Fox and Duck in Stotfold, to help raise the funds for Saniyah's medication - courtesy of the landlord who offered the space for free.
She told the Comet: "Saniyah's condition is very rare - there are other children with Dravet syndrome, but she is the only child in the world with her mutation.
"She needs 24/7 care. Her seizures are severe she can hurt herself from falling suddenly. They can last between one and 90 minutes. and can also come in clusters.
"This means the only time her father and I can get a break is when Saniyah attends pre-school where she has a one-to-one carer at all times.
"Saniyah constantly has seizures without warning. Often we can not leave the house while she recovers for days at a time due to her sensitivity and risk of further seizures.
"Our plans have to be focused around her and her condition or behaviour on the day and this can change very quickly so we often have to cancel or return home. This is very upsetting for my son Zayn. He’s often disappointed and it’s difficult for him to understand he becomes anxious and emotional that she will may not be home when he returns from school."
Dravet syndrome is a rare, drug-resistant epilepsy that begins in the first year of life in an otherwise healthy infant.
Now, mum-of-three Cheryl is hoping a different form of medication will help improve Saniyah's quality of life - as well as to modify the home to fit her needs.
"It’s emotionally draining watching my daughter suffer constantly day in, day out never knowing if she will make it to the next day," Cheryl continued.
"We have tried four anti-seizure medications in the last three years and she is currently taking three of them together with no improvement.
"Her development has been delayed due taking so much medicine. She is exhausted, sleeps for long periods through the day and is at risk of permanent damage.
"We just can’t sit helpless any longer and are now appealing to anyone that can help us raise the money to make her safe."
The fundraising event for Saniyah will take place on Sunday, September 26, from 11.30am to 5pm. It will include a raffle, face paining, arts and crafts, live music and more.
To donate, search 'Cheryl Stagg' at https://gofund.me/72ca9022.
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