I’ll never forget the first time Luella had a seizure. Like a mental tattoo I so desperately wish I could erase or cover over, but cruelly, it will haunt me forever.
She had just woken up from an afternoon nap and looked somewhat dazed, like she wasn’t quite ‘here’, and her body ridged.
Very oddly, in that moment, I just knew she had just had a seizure.
After it then happened again, my husband Dave and I, raced up to ED where on 15th December 2019, Luella just 11wks old, was diagnosed with Infantile Spasms/West Syndrome (IS/WS).
IS/WS is a very rare and disabling seizure disorder in infants, usually with an onset around six months of age. Its estimated approx. 2500-3000 children are diagnosed globally each year. At Luella’s worst she was having 250+ spasms a day.
Devastatingly, her spasms are deemed drug resistant, having failed close to fifteen anti-epileptic drugs (AED’s), and therefore we have been unable to obtain seizure control or freedom.
Due to this, she has global developmental delay and at two years of age she cannot properly crawl, stand independently or walk, and is non-verbal.
However, upon introducing CBD oil, in unison with steroid treatment and one AED, we have managed to reduce her spasms down to about thirty a day. But it is still thirty too many.
Yet she has somehow defied all odds and has taken it upon herself to rewrite her own play book, by making gains doctors told us would be near impossible.
In the last month she has started army crawling, assisted self-feed and is taking assisted steps, all achieved through intensive physical therapies & CBD oil.
Our lives have been completely turned upside down from this awful & aggressive condition, but watching her prove everyone wrong, is so incredibly inspirational. And I hope she brings that motivation for others – to never, ever, give up.
We are beyond proud of her.