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<\/a><\/p>\n\u2018A lifelong condition\u2019: What is Dravet syndrome?<\/p>\n
Affecting one in 15,700 people<\/a>, the Dravet syndrome is characterised by seizures that are hard to treat and significant developmental delays.<\/p>\n The syndrome typically begins when children are 6 months to 12 months old, and the mortality rate is 15 per cent to 20 per cent<\/a> due to SUDEP (sudden unexpected death in epilepsy) and related accidents such as drowning and infections.<\/p>\n And it doesn\u2019t go away when they become adults.<\/p>\n According to Professor Piero Perucca, \u201cwhile onset begins in infancy, it remains a lifelong condition, with reduced survival\u201d.<\/p>\n Adults look at \u201cpersistent seizures, disabling cognitive, behavioural, and motor symptoms\u201d, with little effect from medication.<\/p>\n Medication can help reduce symptoms, but it is not something that can be cured.<\/p>\n \u2018Constant state of fight or flight\u2019<\/p>\n At just four months old, Raphael Lennard had his first seizure, which proved to be long and uncontrolled.<\/p>\n \u201cThe early days were really quite shocking and scary,\u201d said Raphael\u2019s father, Ben Lennard.<\/p>\n What followed were weekly hospital visits and a constant state of fear and uncertainty, only increasing during COVID-19, when restrictions at hospital meant only one parent could be with him at a time.<\/p>\n Seizures were 10 minutes to 20 minutes long, with multiple rounds of drugs needed to stop them.<\/p>\n \u201cIt was happening every week \u2014 trying to make normal life work around that was just impossible, we were just in a constant state of fight or flight,\u201d said Lennard.<\/p>\n There were also developmental delays and reactions to other medications that suppressed appetite.<\/p>\n \u201cThere\u2019s still motor delays, he doesn\u2019t want to eat so he\u2019s not food driven like other kids, we can\u2019t reward him with chocolate because he just doesn\u2019t care,\u201d Lennard said.<\/p>\n And the medication price before the PBS? $10,000 every 60 days<\/a>.<\/p>\n This is often after trying multiple other medications, and those with Dravet syndrome can look at being on at least three anti-epileptic drugs at a time.<\/p>\n This doesn\u2019t even take into account the cost for specialists and hospital visits.<\/p>\n Due to the frequency of seizures and time spent in hospital, Raphael was given compassionate access to fenfluramine, without the heavy price tag.<\/p>\n \u201cIt has been a game changer for us, the seizures are shorter, happening only four to six months,\u201d said Lennard.<\/p>\n \u201cFor other families, just having this option at the start without having to go through all the different concoctions, without having to pay ungodly amounts \u2014 it\u2019s another weapon in the arsenal against epilepsy\u201d.<\/p>\n Impact on carers<\/p>\n Because Dravet syndrome is diagnosed in infancy, the burden of care and advocacy often fall on parents and guardians.<\/p>\n Not knowing when the next seizure will come can be terrifying for child and parent and the helplessness felt watching a loved one going through one.<\/p>\n Both of Raphael\u2019s parents have had to cut their hours to part-time work as a result.<\/p>\n Research shows<\/a> that the burden of care can lead to persistent anxiety, poor mental health and sleep quality, loss of work and financial burdens.<\/p>\n The care burden has also resulted in 55 per cent of carers<\/a> accessing a mental health or family support service for the parents or siblings of the person living with the condition. It is a condition that affects the whole family.<\/p>\n \u2018Stability in the chaos\u2019<\/p>\n With fenfluramine on the PBS, prescriptions will now cost a maximum of $31.70<\/a>, which is huge drop from the previous price of $10,000.<\/p>\n \u201cIt could help so many families like ours find stability in the chaos,\u201d Lennard said.<\/p>\n Lennard said there were also benefits for the wider community as \u201cwe\u2019re not accessing hospitals so much, we\u2019re not going to the GP every week to get new scripts\u201d.<\/p>\n \u201cIt makes life a little bit easier.\u201d<\/p>\n![\"Raphael](\"https:\/\/www.europesays.com\/uk\/wp-content\/uploads\/2025\/05\/1be6dcaeb7d4913a7b867a88150342a7661ac82a.jpg\")
Raphael Lennard now has access to the life-changing medication. Credit: Lennard Family\u2018Ungodly amounts\u2019: $10k every 60 days<\/p>\n