The parents of a brave little girl who can suffer more than 40 seizures a day say raising awareness of her condition is helping them cope.
Wisbech couple Nick and Nicola O’Brien have been “overwhelmed” by public support from across the globe ever since the story of their daughter Maisie was shared on social media.
The 15-month-old suffers from focal frontal lobe epilepsy, global delays and a rare genetic chromosome disorder called shox deletion, which has slowed her growth.
Maisie suffered her first epileptic seizure when she was seven-months-old, but her condition has spiralled and she can now suffer anything from one seizure a day to more than 40.
But if that wasn’t enough, she has just been diagnosed with a genetic mutation so rare her parents have yet to be given a name for it.
Maisie is also the first child with epilepsy to have tested positive for the condition at the Queen Elizabeth Hospital in King’s Lynn.
Nicola said: “At the moment we really don’t know what the future holds for Maisie. She has tested positive for a rare genetic mutation, and we have to wait until we can see a specialist on November 27th to find out any more.
“Every child with epilepsy is tested for it at the hospital, but she is the first to test positive. It’s that rare, we haven’t even been given a name for it .”
“Doctors said before that they didn’t think Maisie’s seizures were doing her any harm, but now they’re not so sure,” she added.
The diagnosis means Maisie’s older sister Lottie, eight, will also now have to be tested for the condition.
Less than two weeks ago the family, of Stow Road, launched an online fundraising page with the help of friends to raise £1,500 for equipment.
The page was shared on Facebook and more than £1,340 has been raised in just ten days – with some money being donated from complete strangers as far away as South Africa and America.
The couple are using the funds to buy a heart monitor, which will read and record Maisie’s heart rate day and night, to help provide a clearer picture of her seizures.
They also want to purchase a sleep apnea machine, to help control Maisie’s breathing at night, and a epilepsy seizure mat to alert Nick and Nicola to when she is having a seizure during her sleep.
Nicola said they are also hoping to donate some of the money raised to another local little girl with epilepsy, who they heard about through raising awareness about Maisie.
She said: “Sharing Maisie’s story and hopefully being able to help others as a result of money being raised in her name is giving us something to focus on.
“We are living through every parent’s worst fears, so if some good can come of what is happening to Maisie, that can only be a positive thing.”
Anyone wanting to donate money to Maisie can visit: www.gofundme.com/wu9tufdm