Cass's Contribute to Dravet Syndrome Ireland

On June 2nd, 2024, at 02.11am, Cass, our then 4 month old baby, woke from his sleep. This was an unusual wake-up time for him. He did his typical feeding routine, and then everything took an unexpected turn. His dad, Billy, called out my name in panic, I came to the sitting room to find Cass having a seizure in his dad's hands. I took Cass and held him loosely in my arms as his whole body continued to convulse. He did not respond to my call or touch, but I was sure he was very much aware. Billy rang 112, while my seven year old son Tyson awoke from his sleep and continued to ask me on repeat “Is he going to die, mammy?”,”Is Cass going to be ok?”, “I’m scared, mammy!”. My parents arrived to tend to Tyson, both extremely upset to see a small baby continuing to seize in such a catastrophic way.

At this point, we asked the 112 operator how far out the ambulance was, while Cass continued to seize uncontrollably in my arms. To our horror, we were told an ambulance would not be with us for 50 minutes or more. We live 20 minutes from UHW, and Cass very likely did not have another 50 minutes in him! I told the 112 operator control that we would be driving our seizing baby to meet the ambulance on route. This information was passed on to the ambulance staff. My dad alerted gardai for escort to meet us on route. An ill-prepared ambulance crew met us as we drove to the hospital.

Cass arrived in UHW stiff and in a dreadful condition. He continued to have a clonic tonic, all-out convulsive seizure for 55 minutes. He was pumped full of all the drugs necessary, and the seizure stopped momentarily but recommenced. When the junior paediatric registrar was alerted to the urgency of Cass’s needs, two consultant paediatricians were called. Cass was sedated, intubated, and in critical condition. We were asked if we wished for a priest to be called at this point!

From here, Cass was accepted for transfer to Dublin Temple Street hospital around 6 am. However, ambulance services would not facilitate transfer until morning staff arrived on duty. The wait felt like a lifetime while we sat and watched our baby intubated on an impersonal hospital bed with machines breathing for him. We were not sure if he would make it, but hope was all we had that our much longed for little boy would be ok.

Cass left UHW in an ambulance with a driver, paramedic, anaesthetist, paediatric registrar and a paediatric nurse, to help stabilise him for the journey and to have all personnel present incase Cass was to take a turn. This meant neither Billy nor I could travel with our seriously ill baby. We travelled on route closely behind them. Cass arrived ahead of us in Temple Street Paediatric Intensive Care Unit, where he remained on a ventilator for another day. Cass spent a week in Temple Street Paediatric Intensive Care Unit(PICU), having an MRI, EEG, and genetic testing. Cass was seen to have focal seizures in PICU. Antiepileptic drugs were commenced. Cass was discharged from Temple Street, and we once again lived in the hope that it was just a one-off seizure.

However, hope was short-lived. On just another ordinary day, July 3rd, 2024, we came back from Tyson’s GAA match, and Cass began to have another convulsive seizure. Billy tended to Tyson while I comforted and reassured Cass. At 5 minutes into another convulsive seizure, there was no sign of stopping, I administered Cass his emergency medication. 10,15 minutes later, and Cass was still seizing uncontrollably but showing glimmers of focusing as I comforted him. This time, we decided not to call emergency services after being so utterly disappointed in their assistance the first time around. We drove our baby to the hospital at 5 minutes into his seizure, breaking every speed limit on the way, praying Cass would survive. At 17 minutes and 30 seconds, Cass stopped seizing. We arrived at UHW, and Cass was admitted for observation, and contact was made with his paediatric neurologist in Temple Street for specialist guidance. A couple of days later, Cass was discharged on more medication. Yet again, we lived in the hope that these seizures would be temporary experiences in Cass's young life. However, Cass developed a variety of seizures from here onwards. He had at least 12 in total before we received an appointment from Temple Street for review.

On the 4th of September 2024, our hope and hearts were shattered, and our lives were turned upside down when Cass was diagnosed with Dravet Syndrome. We learned that he has a rare, devastating, lifelong, severe form of epilepsy, which remains hard to control and drug resistant. This leaves many parents fighting for the latest drugs to be funded by the HSE just to keep their children alive. Cass will face many roadblocks, developmental delays, and maybe more life and death scenarios. His life will not be that of the average child’s existence. He and others with this condition will face many more limitations, which are worsened by the lack of awareness of this condition, lack of government funding, lack of research and lack of family support for those who find themselves learning how to live with Dravet Syndrome.

In our personal situation, our lives have changed overnight and will continue to. Cass will continue to face yet unknown medical and developmental challenges. Tyson, at 7 years old, will, according to the medical professionals, live to see his little brother continue to have debilitating seizures. I have chosen to forgo my midwifery career in order to become Cass’s carer 24/7. Billy will continue to work, but now, with some additional pressures as a sole earner.

During these darkest times, our hope was tested, lost, and restored at other times. In November this year I will run my first Hyrox race in aid of Cass, to show him how strong and resilient we are, how hope favours the brave, and when the world pushes us we push back twice as hard! I’ve been strong and courageous many times in my life, overcome more than some will ever know but this one has made me dig deeper than ever before, and for moments I was unsure we could do it. But if we do not advocate for our child's needs, who will?! The world does not get to take what one reclaims within oneself. Hope remains.

So, I ask each and every one of you who have taken the time to read this to donate what you can to help families who are and for those who in time will find themselves in our shoes. Nobody knows who’s perfect little baby will have their life’s changed forever in one single moment. And if that day ever comes just like me and my family, you will search for answers and for support.

All money raised will go straight to Dravet Syndrome Ireland, a volunteer run charity, whom use all donations to raise "awareness and supporting families with severe genetic epilepsies. Funds raised will help to fund our Family Support Grant, educational events and family days for families in our community".

Please sign our petition to encourage Minister for Health, Stephen Donnelly, to approve public funding for Fenfluramine.

https://my.uplift.ie/petitions/fight-for-fenfluramine

#doitforcass #dravetsyndromeireland

Dravet Syndrome Ireland