'Our daughter, 5, has devastating rare disease that has given her dementia - and she's getting worse'

'Our daughter, 5, has devastating rare disease that has given her dementia - and she's getting worse' EXCLUSIVE: Rosie is one of fewer than 50 people in the UK with a rare a debilitating condition, but her family and others will take on a 100km endurance walk for charity to help their girl The father of a five-year-old girl with a rare and fatal genetic condition said his daughter has suffered from more than 10,000 seizures and is declining. Max Bridge and Emma Vukic, both 39, shared how their little girl Rosie has suffered with dementia and paralysis due to Batten Disease. The cruel condition has no cure and Rosie's dad revealed how his daughter's health has sadly declined. Rosie suffered her first seizure in September 2024, but Max said she deals with about 500 a month now, and suffered with 1,200 on her worst month. Batten Disease primarily affects kids, and causes waste material to build up in brain cells, leading to progressive neurodegeneration and cell death. Rosie has lost all of her language and cannot walk on her own, as dad Max, speaking to the Mirror, said his daughter's health has got worse again in the past year. He said: "She's declined a lot, she's lost a lot of the skills she used to have and that's been really really hard to see. It's been very emotional, very difficult. There's been many many many trips to hospitals, many phone calls to ambulances, phone calls to 999, thousands and thousands of seizures." Rosie started her first day of school this week but her father Max shared how the devastating condition made the milestone. He said: "It's been hard even just going to school. I was there today and they were taking me through how they would have to move her around the class. "She is one of the more severely disabled children in that particular class. The staff, they're not allowed to move her in certain ways to protect their own health, like their own back health and things like that. So, I am having to watch her being hoisted in and out of various different pieces of equipment and it's just this is not a normal school experience." He added: "You're wishing for normality, but you're never going to get it. You're never going to get a normal weekend, you're never going to get a normal holiday, you're never going to get a normal first week of school, you're never going to get a normal anything." Max, however, said he would "do absolutely anything for her", adding: "Obviously I'd love if this never happened, and she didn't have this disease, but I can't imagine my life without her. She's amazing. She's wonderful. She makes me very happy despite things being very hard." Rosie could have her eyesight saved, if she's accepted onto a trial at Great Ormond Street Hospital (GOSH) for children with CLN2, which is one of the 13 types of Batten Disease, with eyesight within a certain range. Max said: "That would be completely transformative. You know, having a child that is blind in and amongst all of this as well, that also is paralysed and also has all the other problems that I've listed, it would just be a lot more challenging. The idea that she would always be able to see me, and we would always be able to you know, have that visual communication, because the verbal communication is gone." Rosie is one of fewer than 50 children in the UK with CLN2, which is the only form of Batten Disease that can receive a treatment called Brineura to help manage the symptoms. This means Rosie has to go to GOSH every other week for the infusions, and she will have to for the rest of her life. Max said: "It's a four-hour infusion into the fluid surrounding her brain that prolongs her life. It delays some of the the symptoms coming on. It gives us more time with her." Last year, the National Institute for Health and Care Excellence (NICE) said children newly-diagnosed with Batten Disease will not be able to receive the Brineura treatment - which costs more than £500,000 per person per year. People who are already receiving the treatment will not have it stopped. Max and Emma, from Acton, are preparing to take on a 100km endurance walk on Saturday to help raise money for Batten Disease Family Association - the UK's only charity for families and people impacted by the disease. Organised by the family friend Cassey Spratt, more than a dozen friends will take on the extreme physical challenge to walk 100km within a 24-hour period. Max, speaking on the charity they are raising money for, said: "They're always there to ask them any question, to give support to families, and especially given what's happened with the treatment, I think any new family who gets this diagnosis is going to need their support more than ever."