Christmas Lights BGP Fundraiser 2023

In memory of Gavin Russell who's wish was that money was raised for research to fund a cure for Ewing Sarcoma and for Dravet Syndrome UK, Penney McKain was diagnosed with Dravet Syndrome and money raised if for family support.

Remembering Gavin Russell 🧡

Gavin was only 13 years old when he was diagnosed with Ewing sarcoma. He sadly passed away two years ago aged just 20 years.
Following their son's death Gavin's family and friends have been huge supporters of Liberty's Legacy, a Special Fund of the Bone Cancer Research Trust 🦋

Together we continue to support raising money for vital research into Ewing sarcoma .This has included running marathons with a giant Aldi UK Kevin the Carrot, holding cake sales, filling collection tins, wreath making and supporting the Christmas Light Fundraiser🏃‍♂️🥕

As always we are grateful for the support shown by the Oakbank community and people of Perth.

#ForGavin #LibertysLegacy #TeamLibs #BoneCancer #Fundraising #UntilTheresACure

We've also raising funds for Dravet Syndrome UK, our niece's daughter, Penney, who has been diagnosed with this life-long rare condition.

Penney was born a happy, healthy baby in August 2021 - adored by her sister Anna and her 3 brothers Alex, Jack and Charlie. At 7 months old Penney had a prolonged seizure and needed resuscitation. It was a challenging time but her parents thought it was a one off. The seizures continued and gene testing confirmed Penney had an SCN1A gene mutation, known as Dravet syndrome - a life limiting, life threatening form of epilepsy. Penney's seizures are triggered by heat, sun light and colds/germs.

The first few months after the seizures started were dark times, Penney's parents dealt with many seizures (usually during the night) and having to resuscitate their daughter. Ross and Jo reached out to DRAVET SYNDROME UK who are a small team that all have first hand knowledge of Dravet Syndrome. DRAVET SYNDROME UK is more like a family - you can call them and they will laugh with you and they will cry with you, they share your good times and they are huge support in the bad times. With their support and through meeting other Dravet families Jo and Ross no longer feel they are in a dark place, as they have their own supply of sunshine in their precious daughter Penney who is now 27 months old.

Despite her seizures, Penney lives life to the full, she is a resilient, funny, cheeky, cake eating, dance loving, table climbing ball of fun! Every day with Penney is a gift.