HAPPY HEART CONDITION AWARENESS MONTH! 

Our son was born with 4 heart conditions. These were undiagnosed through pregnancy, and only found 2 days after he was born - when he was in heart failure. 

Leo endured several open heart surgery’s, and serious infections. We spent 2 months in hospital, and said goodbye to Leo twice; not thinking he would make it.

Here we are, 5 years later - Leo has vocal cord palsy, due to a complication of surgery, which means that his left vocal cord is paralysed - this means his airway is compromised by 25%, leaving him breathless a lot, and unable to pronounce certain sounds; which makes it difficult for some people to understand him. He also now has aortic stenosis; which means he will need another open heart surgery for a valve replacement in the near future. This also means that he will need recurring surgery because as he grows, the heart valve will not grow with him.. therefore will need replacing at each growth spurt until adulthood. 

We first met Kelly from heart heroes at a medical conference where Leo’s surgeon was speaking - they have helped us massively over the years. Heart heroes are a charity who work with children with heart conditions, and their families (mums, dads, brothers, sisters etc!) We have benefitted loads from this charity, and Leo has made some really great friends through it - who help to show him that he is not alone in this fight against CHD (Congenital heart defects). 

Heart heroes do monthly ‘hubs’ in Bristol for families to get together, and for the kids to play which we attended until Leo started school. Now he attends a once monthly ‘I can’ - which is the first Saturday of the month, at the same place and is kids and heart heroes volunteers only. Each month a different club is brought to the children.. for example ‘I can - play the drums’ .. ‘I can - bake’ … ‘I can .. do yoga’. Leo really enjoys trying activities with friends who have the same setbacks as him, as he’s not the only one getting out of breath, or struggling to keep up. 

Heart heroes also have quarterly get together for the entire area they cover; Bristol, Gloucester, wales, Devon - in get togethers such as Christmas parties, Easter egg hunts, summer zoo visits. 

For older heart children; they do monthly get togethers such as bowling, cinema etc.. so they can keep in touch continuously through their journey. 

Some people assume that once you’ve had surgery then you’re ‘fixed’ - but this is not the case. 

If anyone reading this has a child with heart conditions; please find heart heroes or Aimee nicholls on Facebook and we would really love to introduce you to the amazing work that heart heroes do!  

Do you want to join me in making a difference? I'm raising money in aid of HEART HEROES and every donation will help. Thank you in advance for your contribution to this cause that means so much to me.

More information about HEART HEROES: Heart Heroes supports children and their families living with Heart conditions. We organise events, get togethers and information evenings.

Thanks for taking the time to visit my JustGiving page.

Donating through JustGiving is simple, fast and totally secure. Your details are safe with JustGiving - they'll never sell them on or send unwanted emails. Once you donate, they'll send your money directly to the charity. So it's the most efficient way to donate - saving time and cutting costs for the charity.