Kind strangers have rallied to save an epileptic tot who faced 'hundreds' of seizures a day without her essential Dioralyte supply - as Britain faces a national shortage due to the war in Ukraine. Chloe Cox feared for little Tia Holt's life and desperately turned to Facebook to plead for donations of the rehydration product after she was repeatedly told by pharmacies that there was none left.
The 22-year-old has been feeding her daughter four sachets of the supplement a day as part of the ketogenic diet, which Chloe claims has kept the youngster seizure-free for eight months. Before she went on the diet, the three-year-old was experiencing hundreds of seizures a day, with one being so severe that she was nearly put into a coma and left Chloe fearing for her life.
However, a nationwide shortage of Dioralyte in pharmacies, caused in part by the Ukraine war, led Chloe to panic that the seizures would return. Fortunately, the full-time carer was able to gather two months' worth of supplies after generous Brits mailed in boxes of Dioralyte from across the country.
Sanofi, the pharmaceutical company that produces Dioralyte, blamed the war in Ukraine for causing the shortages and has promised to resolve the 'patchy availability'.
Chloe, from Great Harwood, Lancashire, said: "The formula she has is made up of different powders weighed to the exact gram and the Dioralyte is one of them. If that's not in the formula, she won't be getting the correct ratio of fat to carbs. It can cause a seizure if it's not measured correctly.
"There's a national shortage at the minute. No pharmacies can get Dioralyte. I've phoned hundreds. Our usual pharmacy couldn't get it. Our GP put the prescription into two or three other pharmacies to see if the Dioralyte was anywhere else.
"Our dietician was checking in with local hospitals, but we couldn't get it anywhere. When you think about the fact that the war in Ukraine is causing this disruption, it's quite sad really.
"You wouldn't think that something that's happening hundreds of miles away would have that sort of impact here. What's happening over is Ukraine is really serious. I never thought it'd factor into something like Tia's health."
Chloe put out a desperate plea on Facebook asking for donations when she realised she only had supplies for a few more days. Chloe said: "We only had enough until Friday. If we'd gotten past that point, we wouldn't have had any food for her.
"So I had to reach out on Facebook to see if anybody could help, it was very stressful. I was so worried. This diet was what was stopping the seizures and I didn't want to go back to her having the seizures.
"Thankfully we managed to get together two months' worth of sachets. It was a big relief. Fingers crossed, pharmacies will be able to get Dioralyte soon. Rehydration packets are under a shortage everywhere apparently.
"The prescription had been put in three weeks before I put out the Facebook post. A few days before was when I was ringing around trying to find somewhere that had Dioralyte. Our pharmacy has gone above and beyond. It's not the NHS' fault. Our dietitian is amazing at helping normally, however she was off so we couldn't ask her what alternatives we could use."
Tia was first diagnosed with Infantile Spasms in January 2020 before being diagnosed with Severe Complex Epilepsy a year later in January 2021. Chloe said: "She was having hundreds of seizures a day. They were constant and varied in severity.
"It was a worrying and anxious time for me, you don't know what's going to happen, seizures can cause brain damage. The worst case scenario crossed my mind a lot that she could die from a seizure.
"The worst seizure she ever had saw her being hospitalised at Preston Hospital. They said she was fifteen minutes away from them needing to put her in a coma if her seizures didn't stop. Thankfully, her seizures stopped with a minute to spare.
"She's not had a noted seizure since December 17th 2021, because she's been on the ketogenic diet. A lot of people use the diet to lose weight but it's for kids who aren't helped by medication. It's a high-fat low-carbs diet and it's stopped her seizures.
"We'd tried so many medications. The chances of medications working for Tia were two to four per cent. I was looking at alternatives and the diet popped up, so I mentioned it to the consultant who agreed that Tia could be a candidate for it.
"The Dioralyte and Tesco Rehydration packs supplement her diet. At the minute, she's being tube fed and she'll have four sachets a day. She's not eaten solid food since January because she got severe tonsillitis and nearly choked, so she's traumatised herself from eating. You can't just give Tia anything. You have to make sure everything is keto friendly."
Chloe's Facebook appeal was shared more than 160 times and saw her being gifted approximately 250 sachets. Chloe said: "I didn't expect two months' worth just from posting on Facebook.
"I went out and collected some, as did my nan and my mum. Other sachets were dropped off at the house and others are being sent through the post. A lot of people tend to use these sachets after they have a sick bug so they can be rehydrated. Tia needs them because she's on a powder diet.
"The fact that so many people reached out to help made me feel overwhelmed in a good way. It gives me a lot of hope. The fact that this whole situation came out of Putin doing something evil and is being resolved by other people's kindness is really touching to me."
A Sanofi spokesman said: "The UK is facing supply chain challenges across a number of sectors at the moment due to complex and interconnected global issues such as the war in the Ukraine and the macro-economic situation. This unfortunately means that some people may be finding that there is patchy availability of Dioralyte products.
"We are working hard to resolve this as quickly as possible and in the meantime we are doing everything we can to ensure that we are getting as much supply as possible into the UK. We would encourage anyone who is concerned to consult a healthcare professional."
Tesco has been contacted for comment. A Nattermann & Cie GmbH, who manufacture Diarolyte in Germany, has been contacted for comment.
