This is Scarlett-Olivia, my beautiful daughter. At the age of 3 years ten months, she began to have seizures. To this point, Scarlett’s development had been in line with that of a neuro-typical child. Unfortunately her seizures rapidly worsened and by the age of 4 she was diagnosed with Lennox-Gastaut Syndrome. Lennox-Gastaut Syndrome is a severe, refractory and complex epilepsy that encompasses many different, extremely frequent, seizure types along with learning disabilities, psychological co morbidities and sensory processing issues. Over the course of 8 years, we have tried in excess of 15 different anti epileptic drugs, high dose steroids, surgery to implant a Vagus Nerve Stimulator and ketogenic dietary therapy. Due to the extremely drug resistant nature of LGS, a treatment may initially seem to work; then quickly lose its efficacy. We have exhausted pharmaceutical options, with the exception of Bedrocan products, containing THC.
Most recently, Scarlett had to be admitted to ICU in a life threatening cluster of seizures, defined as status epilepticus. In order to bring the seizures to a close, and after using several other drugs, she had to be induced into a coma. She was intubated, a central and arterial line put in and the coma lasted a week.
As the drugs were metabolised, Scarlett’s seizures returned. Scarlett is now back at home, and it is clear that her health care needs have changed dramatically. My husband has taken 6weeks off from work, and although his company could not have been more supportive, it is clearly untenable.
This page was originally set up by my sister, and we are beyond grateful to her. I have taken over the account in order to provide updates and photos regularly, and also to make media contact easier. Due to the overwhelming success of the campaign so far, solely down to every one of you, the press have picked up Scarlett’s story for interviews next week. So aside from directly helping us, each of you is responsible now for raising awareness of the devastating consequences of refractory epilepsies.
The money that has been raised so far will buy Scarlett several items of vital equipment that I have been unable to acquire. It will buy Scarlett the Empatica Embrace wearable device; which detects seizures and alerts caregivers. It will pay for the subscription service for this, which will produce reports for Scarlett’s Consultant. It will pay for the Sami-3 sleep activity monitor, which will alert me to Scarlett’s seizures and automatically record them. It will pay for a specialist wheelchair with reversible seating unit, so that I am still able to see Scarlett whilst I’m pushing her. It will buy Scarlett an anti suffocation pillow. I have applied to a number of charities to fund other essential items; an Olaf padded bed, that costs an eye watering £10125, a sats monitor as her oxygen levels drop drastically, equipment to try to rehabilitate Scarlett. All of the above items will change Scarlett’s life, and my ability to provide her with the best care possible. In order to future proof, the next stage of our fundraising efforts will be to acquire donations, sponsors and funding to enable us to add a ground floor bedroom and wetroom for our daughter, equipped with overhead hoist system, allowing Scarlett full access to the ground floor and gardens. We understand now that she will not live independently, and we accept this.
Every mother will say their child is special. Mine is; she really truly is. She is the definition of a warrior. She is hilarious, and tough and unwaveringly kind. She is our crazy beautiful.
To end on a happier note, I wanted to share with you all what my girl did, the very first thing she did, when she woke from the coma. Before even opening her eyes...she smiled.
From the bottom of my heart, thankyou. The money helps with all of the practical bits, but the support? The value of that is immeasurable.
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