Demelza have supported myself and my family ever since my youngest daughter was diagnosed with a severe and life limiting epilepsy called SCN2A Epileptic Encephalopathy. I am doing this climb to help give back to demelza and say Thankyou for all of the help and support they have been able to provide us, without which, we would have struggled and felt isolated on this journey. 

My youngest daughter, Wren, started to have seizures the day after she was born. For the first four weeks we didn’t know exactly what was happening, the local hospital thought she was just had reflux. When she was a few weeks old she had 13 seizures in a row and so we took her to a different hospital for a second opinion, it just so happened that the epilepsy consultant was in and watched the video of wrens ‘reflux’. As soon as the video finished he pulled out his mobile phone and called to book her in for an EEG (a scan of the brain waves) the next morning at 9am. During this appointment we knew something wasn’t quite right but didn’t have anymore information. The night after the EEG wren had a seizure that didn’t stop, lasting around 20 minutes, and so we were blue lighted to hospital. The following day wren was accepted as a patient by the Evelina children’s hospitals neurology ward. We spent four weeks living at the hospital trying to work out what was causing these seizures, the first night that I stayed at the hospital wren had a 2 hour long seizure! The Doctors decided to carry out genetic testing on wren, this test took 12 weeks but finally gave us the SCN2A diagnosis. This gene mutation causes severe epilepsy in around 1 in 500,000 children, but wrens version of the mutation has never been seen in another child, anywhere in the world. 

Demelza became involved when wren was 4 months old - we got the letter to say wren had been accepted to use Demelza’s services on the day she had her highest number of seizures in a day, 125. Over the last two years demelza have been amazing and really supported us all as a family. Every Tuesday we attend a baby and toddler group for tea, cake and a chat with other parents who also have very unwell children. They support us with respite to enable us to have a break away from the constant medical needs of wren (Wren loves her respite stays, with cuddles, playing and her favourite thing…being given lots and lots of attention) the respite also allows us to do thing with our oldest daughter that would be impractical with wren such as woodland walks, trampoline parks etc. The demelza team also provide support to our oldest daughter to help her understand and process what is happening with her sister. Demelza are always checking in on us as a family and will often come to the house for a couple of hours to give us a break and entertain wren with messy play and story time. We also know that when things progress towards the end with wren, demelza have a dedicated team and suite within the hospice to support all of us as a family and make every moment as stressful free as possible.

I would be extremely grateful if you could donate towards this amazing cause and help other parents who unexpectedly end up in this situation, have access to the support and care that demelza provide to families like ours. No one ever expects to be in the situation that we are, having to comprehend that our daughter may not live more than a few years having had no idea that this was going to happen.