Hi my name is Rachel and I am mum to the most wonderful daughter called Jessie. We live in Derbyshire with dad Daniel and big brother Thomas. She is so brave and beautiful and her life has been interesting to say the least.
Jessie was born at a healthy 8lb 11ozs with no complications, she developed well hitting all her milestones, she walked at 10 months and all was on track. When she was 10 months and 2 weeks she had a febrile convulsion which was scary to see but we didn’t panic too much as our son Thomas had one at 18 months, so after a quick check-up we went home. Two weeks later she did it again but this time it wouldn’t stop and after a blue light ride to the hospital and many drugs she had to be intubated.
I can’t even put into words what watching that scene felt like and I still to this day cannot get that vision out of my head, the worst time was seeing her stop breathing on my lounge carpet and my husband about to start mouth to mouth. Luckily the paramedics walked in the door just in time.
Unfortunately we had to witness it again seven times over the next two years, in and out of hospital every week. I did at one point ask for our own parking space!
Obviously the doctors started doing the usual tests, MRI, EEG’S etc all clear and nothing on them and after the second seizure we had a very experienced consultant who gave us the words “Dravet syndrome”. Quite early on he put her on Epilim, this was in 2006. We were then told that a blood test would be sent to Glasgow for genetic testing for Dravets, this came back negative or so we thought.
"I can’t even put into words what watching that scene felt like and I still to this day cannot get that vision out of my head" Rachel Spray
There was a mix up and her blood was never tested so in 2010, four years later, she was tested again and guess what POSITIVE!!. It was at this point I sought out Dravet Syndrome UK who funded a pulse oximeter, it has helped us immensely especially with her respiratory arrest habits. Our doctor still continued in the four years between to treat her for Dravets adding more meds to try and get some control including Clobazam, Topirimate and Keppra.
Some worked but others side effects were too much for her. She is now on a combination of Epilim, Keppra and Stiripentol. These have the best effect for her she still has seizures with temperatures and illness and has 2-3 tonic clonics/complex partials a month and absences are a daily occurrence but this is fabulous compared to previous years.
Over this last few years Jess has developed other problems including Ataxia, hypermobility, ASD to name a few and recently she has had a gastrostomy as her appetite is all but gone. This is due to meds but after some careful thought we decided her quality of life would be much better and we were proved right, she is steadily putting on weight, is a lot stronger and more lively. We also transferred her over to a special needs school since Christmas as her mainstream school were struggling to meet her needs.
Although she had a full statement she was spending most of the day on her own with her one to one as she could not keep up with her peers, she’s roughly at a mental age of three years. This again has proved to be a good decision although it was a very difficult one, there were tears from me, thankfully she has settled in brilliantly, is socialising much better and even going swimming!
Without wanting to jinx things Jessie is doing better than we ever could have hoped for and she has just celebrated her 7th birthday. When writing this and reliving those dark times at the beginning of her life I never thought we would be in this position, let alone still have her with us. My mantra throughout has been “as long as she is happy then I am” BOY YOU SHOULD SEE THIS GIRLS SMILE