As you know, last year we lost our beautiful, Hannah. Hannah was one of those incredibly rare people in life who make you feel special, heard, understood and loved. Many people have talked about her beautiful energy, kindness and openness, which disarmed you to make you feel you could wholly be yourself. She had the most infectious laugh and a wonderful zest for life. When deliberating on a tough decision or trying to make a plan, we often say 'Be More Hannah', she made moments special and made life count.

Since last March, we have taken time as a family to digest the information we received from the coroner’s report, which concluded that SUDEP was the cause of death. SUDEP is defined as Sudden Unexpected Death in Epilepsy. It refers to deaths in people with epilepsy that are not from injury or other known causes and by its very nature is unexplained.

Tragically, epilepsy-related deaths are a major public health problem in the UK and in Australia and many are potentially avoidable. According to research carried out in 2021, mortality ratios increase significantly in young adults between the ages of 16 to 54.

SUDEP Action is a charity dedicated to raising awareness of epilepsy risks and tackling epilepsy deaths including SUDEP. A key element of their work is supporting research through the Epilepsy Deaths Register “making every epilepsy death count”. Their work has five pillars:

- Supporting the bereaved

- Making every epilepsy death count

- Producing research aimed at saving lives

- Providing information

- Involving everyone we can to help save lives.

This summer, we decided to begin our support for this vital charity by undertaking a series of fundraisers including a 10k run, sponsored swims and sunrise and sunset walks across places in Edinburgh that Hannah knew and loved. The support of these fundraisers was incredible and helped us to raise funds and awareness for SUDEP Action.

In October as part of the epilepsy community, every person who completes a 5K is supporting the vital work of SUDEP Action. Our family will undertake a relay on Saturday 5th October at Portobello, along the sea front. It will include a 5k paddle board, a 5k canoe, 5k runs and a 5k cycle. The age range of our family team ranges from 4 to 76 years old! What a team!

If you wish to do your own #MyWayto5k, your 5K should take place between 1st and 20th October, register today: https://register.enthuse.com/ps/event/MyWayto5K

#epilepsyawareness #SUDEP

Thank you for your support of this essential charity.

Much love,

Hannah's family

xxx