An appeal has been launched to raise £3,500 for a special bed for a six year old girl who at her most ill had 300 epileptic fits in 24 hours.
The Facebook Whittlesey Discussion page was approached by friends of the youngster’s mum to help raise funds for the bed so she can sleep safely at night.
At just 17 days old Lotus Cameron-Daniels was diagnosed with epilepsy and what started with one or two fits a day increased to 10 a day.
By the time she was three months old she was on three different epilepsy medications.
Eventually Lotus was diagnosed with intractable epilepsy which meant no drugs would work to control the seizures.
Her mum Lorraine said: “This was devastating as how do you begin to cope with the news that the next seizure could take your child’s life.
“At this point Lotus was having on average 50 seizures a day and at her worst 300 seizures in 24 hours.”
For two years Lotus and her mum travelled between Peterborough Hospital and Addenbrooke’s undergoing various tests but after trying various medications still nothing worked.
At nearly four years old Lotus couldn’t walk, talk, hold a bottle to feed herself or play with toys.
She was a toddler stuck in the body and mind of a six month old.
By April 2014 Lotus’ seizures were out of control and she underwent surgery lasting almost ten hours.
After just five days she went home to recover and since then has learnt to walk, read, feed herself, play and has learnt some sign language.
Lotus cannot talk, has severe learning difficulties, no awareness of danger and surgery has left her with severe weakness of her left leg.
She has been seizure-free for 18 months, six months of which have been medication free.
Lorraine has to sleep next to Lotus for fear she will fall out of bed and be unable to alert her mum which prompted friends Mandy Wilson and Miriam Palmer to ask for help in raising money for the special bed.
The Facebook page has already raised £700 and now plans a race night, a disco quiz night and has asked members to donate items for auction.
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