I spoke with the inspirational Jody Louise Crook who talked about Brugada Syndrome and what happened to her beautiful 14 month old daughter back in August 2021. Her family life has been turned upside down.
In August this year, Sienna, at just 14 months old, suffered a sudden cardiac arrest and was given life-saving CPR by her Godmother Kaylie. Despite all the odds being stacked against her she fought so hard to still be here. Sienna has since been diagnosed with many heart conditions, but most severely, the very rare and life threatening heart condition Brugada Syndrome. Following Sienna’s diagnosis and her previous history she recently underwent open heart surgery to fit an ICD & pacemaker.
Sienna’s mummy, has also been diagnosed with Brugada Syndrome and we are awaiting testing of Sienna’s big brother Theo.
There is no cure for Brugada Syndrome, therefore we have set up the Instagram page below to share Sienna’s story with the aim of raising awareness of Brugada Syndrome, sharing important information and raising funds to go towards the vital research needed to find a cure to help Sienna and other Brugada patients. In just one week we have raised an amazing £16,000 ♥️
We decided that rather than let the heartbreak consume us, instead we would channel our energy into positivity and therefore started an awareness and fundraising campaign (raising over £16,000 in less than two weeks) to find vital research into Brugada Syndrome. In that time we have even worked with our local school to raise funds for a defibrillator in the event that somebody may require it and I am delighted we have initiated such a positive step to potentially save a life, or more, in the future!
Please read our full story (within the just giving page) and we would be most grateful if you’d consider covering it in order to raise awareness of this condition. Thank you.
You can follow the page using the link below: