Katie Sullivan is six months pregnant, but instead of preparing to welcome her second child into the world she is tirelessly fighting to fund the ‘life-changing’ medicine that keeps her daughter Evelina alive.
“When you have a child with special needs you don’t really have time for feeling sorry for yourself,” says Katie Sullivan, 32.
“You’re regularly at breaking point, but you have to manage your emotions. I’m Evelina’s advocate, she needs me to be on form.”
Evelina, now three, had her first seizure at five months old.
“It lasted for hours, we just didn’t think we were going to be taking her home,” Katie remembers.
It took a year for Evelina to be diagnosed with cardiofaciocutaneous (CFC) syndrome, an extremely rare condition which affects many parts of the body and is caused by a mutation in the BRAF gene.
“It’s something like one in a million, so there’s not a huge amount of research around the syndrome because it’s so rare,” Katie continues.
“Most consultants haven’t even come across a child with the syndrome, so they label it refractory or intractable epilepsy and are just trying to treat the symptom, to control the seizures as best they can.”
As a result of the condition, Evelina also suffers from a myriad of health issues. She is unable to talk or hold her head up and is fed through a gastronomy tube in her stomach.
It was not uncommon for her to have up to 100 seizures a day, lasting a minimum of five minutes.
“It’s been a daily, weekly, monthly battle – some days are worse than others but we have seizures every day,” says Katie.
“Since she was five months old, we were constantly being blue-lighted to hospital.
“Sometimes there would be three hospital admissions in one month and multiple intensive care stays.”
To control the seizures Evelina was prescribed a cocktail of anticonvulsive drugs, which left her heavily sedated.
“She was just asleep or eye-rolling all the time, it was no life for anyone really,” adds Katie.
“And she was still having seizures, so you kind of think, why is she on all this medication if it’s not keeping us out of hospital?
“It felt like a race between the seizures killing her or the cocktail of drugs she was on.”
It was a family member who suggested they try cannabis oil and after coming up against a brick wall with health professionals, Katie reached out to Hannah Deacon on Facebook.
Katie and husband Jonas, 36, Evelina’s dad, joined the End Our Pain campaign and finally secured a private prescription for medical cannabis at the end of last summer.
“The difference was hard to see at first and it was costing us thousands and thousands of pounds, so we were a bit dubious, but we had nowhere else to go. We had tried everything,” she says.
However after a few months of finding the right dose and strain, they started to see an improvement in Evelina’s seizures.
“It’s not taken them away completely, but it has stopped our admissions to hospital and stopped her having prolonged seizures, which for Evelina is life-changing,” says Katie.
“Since early February we’ve only had one hospital admission and instead of five minutes long the seizures have been 10 or 30 seconds.”
She adds: “We’ve been able to wean her off two of her anti-epileptic drugs, so she’s now just on two anticonvulsants and the CBD oil, which was the whole point – to take away the risk of toxicity.”
However with no access to medical cannabis on the NHS the family are faced with the strain of trying to fund her prescription each month.
“We’re always on the edge financially, every month it’s finding the money for the mortgage and then the CBD oil,” Katie explains.
“It’s a combination of me and my husband financing it, friends and family members donating or complete strangers on Go Fund Me.
“Ultimately I don’t know how long we can keep it up. With another little one on the way, I can’t see that we’re going to be able to sustain the fight every month to find that sort of money.”
This week Katie joined other mums from the End Our Pain campaign in holding public vigils outside UK health authorities to urge the Government to step in and fund their private prescriptions as an interim measure until the NHS starts to prescribe.
“Families can’t be going through this kind of financial and emotional struggle on their own,” she says.
“They need to be able to focus on their child, not where they are going to get the money for the medication to keep them child well – we need it funding.”
The security of knowing where her prescription was coming from each month would mean Katie and Jonas could focus on giving Evelina the quality of life she deserves, such as adapting their house and getting her the physio she needs.
“We don’t know what the future holds for Evelina, but to have the medicine that she needs taken care of would be a miracle,” says Katie.
“It would be absolutely amazing to be able to concentrate on improving her life.
“At the moment she is just confined to home and basically living a prison sentence, we really shouldn’t be having to fight for the medicine that gives her relief.”
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