On the 14th of September Teddy’s Mum, Dad, Nan and Aunty are taking part in Zipworld.

We will soar over Penryhn Quarry, at speeds of up to and over 100mph, while taking in breath-taking views of Eryri (Snowdonia), on a 1.5km zip line in aid of the charity Dravet Syndrome for our Teddy Bear.

As most of you know Teddy has Dravet Syndrome (a life limiting epilepsy) -

• Prolonged seizures

• Frequent seizures

• Behavioral and developmental delays

• Movement and balance issues

• Orthopedic conditions

• Delayed language and speech issues

• Growth and nutrition issues

• Sleeping difficulties

• Chronic infections

• Sensory integration disorders

• Dysautonomia, or disruptions of the autonomic nervous system which can lead to difficulty regulating body temperature, heart rate, blood pressure, and other issues.

As most of you know who follow our journey on Instagram/TikTok and Facebook Teddy has Dravet Syndrome. He started having seizures from 6 weeks old and from then his never had a break. His had over 100 hospital admissions, over 300 times we have had to ring 999, mri’s, eeg’s, ecg’s, lumbar punctures, intense blood tests to get to this point of a diagnosis. Teddy is on his 9th medication now, and we are nowhere near seizure free, at the moment he is requiring emergency medication every single day/night.

Current treatment options are limited, and the constant care required for someone suffering from Dravet syndrome can severely impact the patient’s and the family’s quality of life. Patients with Dravet syndrome face a 15-20% mortality rate due to SUDEP (Sudden Unexpected Death in Epilepsy), prolonged seizures, seizure-related accidents such as drowning, and infections. We know Teddy is going to have this forever now as there is no cure for Dravet Syndrome, but with fundraising we can help to fund experiments for new meds and maybe one day there will be a cure.

Teddy will never be independent he will always need 24/7 care, it’s the most unpredictable epilepsy. It can change so quickly. About 10-20% of people with this condition are estimated to pass away before adulthood, with most premature deaths occurring before 10 years of age. Something that makes me feel physically sick thinking about, but Teddy has the best family around him, and we will all be there to support him through every single seizure he has. The fact we might outlive our own child is a constant worry that never leaves you.

There is no cure for Dravet Syndrome this is something that is going to be with us forever. Teddy goes into status epilepticus a lot (this is a seizure that lasts longer than 5 minutes) his longest seizure has been up to 2 and a half hours, so a 5 minute seizure to us is a ‘good one’. Teddy has required resuscitation, and his dad actually saved his life.

I'm writing to ask you to support Teddy and our team. Your donation will go towards Dravet Syndrome UK who are, ‘’Dedicated to improving the lives of those affected by Dravet Syndrome through support, education and medical research”.

Let’s find a cure!

Lots of Love Ted’s team!

Thank you ♥️