Appeal launched to fund vital alarm for Lola, 3
A mother is appealing for help to fund potentially life-saving equipment for her three-year-old daughter who suffers from a very rare form of epilepsy.
Lola Sheldon had her first seizure at four months, and following hospital tests epilepsy, due to a gene abnormality, was diagnosed which she will suffer from for the rest of her life.
Each seizure puts Lola back in hospital.
“It is absolutely petrifying,” said her mum Carly, 28, of Common Lane, Fradley, near Lichfield.
“I have had to give her mouth-to-mouth resuscitation.”
Carly said doctors discovered that Lola’s illness is very rare - fewer than 10 people worldwide have it - and she takes three different forms of medication twice a day - three in the morning, three at night.
“The drugs are meant to try to suppress the seizures,” explained Carly.
“Every time Lola has one, her medication is increased.
“Her epilepsy is so complex it is horrible - it is really, really hard.”
Some of the seizures happen at night so Lola sleeps in the same room her mum and dad Luke, 27.
It means Carly is constantly listening out for movement in case their daughter is suffering at attack.
“Her breathing changes when she has a seizure,” explained Carly.
Normal
“But there is always a chance I won’t hear her.”
The hope is to rent an alarm called a Brio which would beep in the night if Lola’s heart rate goes up or down alerting Carly to a possible seizure.
“It would be amazing,” said Carly. “Lola could sleep in her own room.
“Although she will have this epilepsy forever I just want her to have as normal a childhood as possible.”
Carly described Lola as “a very, very happy little girl”.
“Considering what she is going through she is very bubbly and independent.”
Carly also praised Lola’s big sister Brooke, 10.
“She is brilliant - she has alerted me in the past and knows how to put Lola in the recovery position.”
Carly said the Brio epilepsy alarm, which Lola would need indefinitely, costs £449 a year to rent.
Her friend Holly Slattery has set up a gofundme page to help raise money.
“This equipment is needed so that Lola and her amazing mummy can sleep soundly at night,” she said.
“We are massively grateful for any help towards the funds.”
Carly wished to say “a big thank you” to everyone in the community who has donated.
Anyone wishing to help can visit uk.gofundme.com/f/lolas-epilepsy-equipment-fundraising
