Forever Faith Foundation is a non-profit organisation.
Our mission is to raise awareness of Congenital Heart Disease and to provide support to families who have a child diagnosed with a CHD and supporting smaller charities in doing the same ‘giving back’.
Giving Back – The power to positively impact the lives of individuals, families and even entire communities. Giving back can bring hope and inspiration to those in need.
We feel passionately that every family facing hardship with having a seriously ill child, has the right to create memories that are everlasting without having the worry of financial constraints.
Forever Faith Foundation was created after losing our very own Warrior Princess Miss Faith from a rare Congenital Heart Disease, Hypoplastic Left Heart Syndrome (HLHS).
Faith always lit up any room with her gorgeous smile and beautiful friendly wave. As a small charity based in Cornwall, it is our mission to share Faith’s magic and Inspire Hope with local families. We will provide them with the extra love and support when they need it the most.
‘With Faith comes Hope’
Faith was born 27th January 2022 at St Michaels Hospital Bristol. Faith was born with the biggest mop of dark hair we had ever seen, weighing 6lbs 13oz of pure Magic.
Wherever Faith went people fell in love with her beautiful smile and her friendly wave.
Faith had an antenatal diagnosis of severe Hypoplastic Left Heart Syndrome, as well as Mitral Atresia and Aortic Atresia, confirmed at birth. We were told the devastating news that this was a life-limiting disease, there was no cure and HLHS was a palliative surgery pathway. Faith would need her first open-heart surgery (OHS), Norwood, within days of her birth.
At 6 days old Faith underwent The Norwood (OHS), at Bristol Childrens Hospital. The surgery was a success, our Heart Warrior Defied all odds. On the 5th of March Faith was transferred to Treliske Hospital in Cornwall. At 72 days old Faith was discharged home.
The second OHS, The Glenn looked a little bit different for Faith. After her heart catheter, it showed Faith’s arteries to be smaller than the norm. We went into the Glenn with two options, go ahead with the Glenn or upsize her Sano Shunt, this decision would be made during the surgery. Unfortunately, Faith suffered a huge bleed, and her arteries were even smaller than they originally thought, and the decision was made to upsize the Sano Shunt.
The hope was that with new medication Faith’s arteries would grow and after a few months be ready for The Glenn and for the time being remain on the Norwood Circulatory.
Unfortunately, the next few months were difficult, and Faith’s heart was found to be too poorly to be able to progress any further along this pathway.
In May 2023 at 16 months old we received the heart-breaking news that no family wants to hear. There was nothing else medically that they could do for our beautiful Faith. The advice given was to move to palliative care services and a referral for us as a family to be supported by Children’s Hospice South West (Little Harbour).
We were all devastated, at this point we were not ready and started the process with the support from both of Faith’s doctors from Bristol and Cornwall. We asked for a second opinion from Great Ormond Street and then from the Freeman Hospital in Newcastle, both opinions were the same as Bristol’s. At this time Faith was deteriorating fast and all we could do was try and make every second count with our Warrior Princess Miss Faith.
At 20 months old on the 1st of October 2023 at 20:05 Faith went to dance with the angels peacefully in my arms.
I knew that I wanted to do something in Faith’s name to make her short but precious life count and her to have a meaningful Legacy, what better way to do so by ‘giving back’ by not only raising awareness about CHD and HLHS but to also support other families that are going through the same as we did. By spreading Faith’s magic not only starts to heal us as a family but also carries hope to others…. Forever Faith Foundation was born.
Congenital Heart Disease (CHD) is a general term for a range of birth defects that affect the normal way the heart works.
The term “congenital” means the condition is present from birth.
Congenital Heart Disease is one of the most common types of birth defects.
There is no cure. Most causes are unknown.
Life long care is required for babies born with CHD.
For more information please click here.
One-off Grants
For transport and accommodation expenses when attending out of county hospital appointments or surgery. We also cover the cost for various memory making activities such as family photo shoots.
Hospital Baby Boxes
‘A little bit of Faith‘ – Filled with lots of love and everything your heart baby will need sprinkled with Faith’s magic. These boxes are personalised. We provide sibling boxes too.
Faiths Helping-Hand Bags
All the essentials you need when you find yourself in hospital on an emergency stay.
Annual donations to, Hug in a Blanket, Jorgies Buddies
and The Little Ted Foundation.
We aim to achieve our goals with Fundraisers;
Coming Soon.
Working with children and families living with heart conditions. Established in 2018, Heart Heroes supports both children and families affected by life long heart conditions through inclusive projects, subsidised trips and events, family support in hospital, mental health and well-being support, and much more!
Hug in a blanket is a voluntary group who make personalised blankets from crocheted and knitted squares for under 18s with a terminal or life limiting illness or disability. Each blanket is made in the child’s favourite colours and features their name and picture squares showing their favourite things.
The Little Ted Foundation was set up following the loss of our beautiful baby boy, Ted, to cancer in April 2022. He was just 16 months old. We draw from our own experience for the duration of Ted’s illness, and as bereaved parents to offer much needed support to other families in the same position. We offer bereaved families and those with seriously ill children fully funded holidays.
We are Jorgies Buddies. We give children with life threatening and life limiting conditions personalised comfort bears to keep them company on their journey. We also give families whose children have gained their wings an angel bear in the child’s memory.
