STARS Patient Information
Freya was only 16 months when she had what we now know to be her first seizure. We were at my mother-in-law’shouse and Freya had been playing with her 3 year old brother when she started to get tired and grouchy. She came over to me whinging as she had been told she could not go through the door to the hall. Being so little and still unsteady on her feet, she fell over, glancing her head off the skirting board. Naturally, I ran to pick her up and noticed she was not only a little floppy, but was fast asleep! "Gosh she must have been tired that's a little odd” I thought to myself, but then thought nothing of it.
About two weeks later, we were invited to an awards evening for my husband. Freya stayed with my mum, and my son came with us. Afterwards, we picked Freya up from my mum’s and when we got home we put the kids in the living room to play for a few minutes before bed. I noticed my son snatched a toy from Freya who immediately let out a cry, then bang! She went as stiff as a board and fell flat on her face, her arms curved back away from her body and her limbs jerked. She didn't get up. I screamed for my husband who came running in and scooped her up. Everything happened so fast but felt like an eternity. As we flipped her over onto her front, she had stopped being stiff, and was floppy like a rag doll. Her face was white; lips blue and her eyes had rolled back into her head. When people say their child looks dead, it really is a truthful description. It was so terrifying. She made a horrid noise like she was trying to make a sound but whatever was happening to her prevented it. She was super emotional when she came round, and then fell asleep. Although I was nervous about it, instinct told me I should just let her sleep.
Freya is now nearly 24 months old and, unfortunately, she is still having seizures. Trying to explain to people is difficult as you get the same reactions "oh my little so and so does that sometimes when he has a tantrum" or "yes my daughter holds her breath too, it's called breath holding spells..." suggesting you are being over anxious or they are an expert on the situation. Luckily the consultant Freya saw was brilliant and very clued up on RAS and after a sleep EEG finally diagnosed RAS.
For us, STARS has been the ultimate fountain of knowledge. We were able to show literature to family and friends to explain what happens and what to do. The support is amazing and one of a kind for this little known condition.
Thank you to STARS, and we continue to be optimistic that one day Freya will be seizure free.