WHOLEHEARTEDLY LIVING WITH A UNIQUE HEART!
KNOWLEDGE IS POWER - SHINING THE LIGHT ON CHD'S
'The more we talk about a Single Ventricle anatomy heart the closer we will get to finding a cure'
Hello beautiful souls...
Thank you for joining us here to bring awareness, understanding and knowledge to the world of what living with a single ventricle is all about. This is our unique life journey with our daughter who has a single ventricle heart! I’m so happy you're here. Lots of you have already been following us along on our many soul filled adventures for many years! It started out with just myself and Reece enjoying traveling and immersed in our healing journey. In 2020 our wild child Bodhi came along in lockdown and he became the sunshine in our life! We had the most magical pregnancy with Indianna Océane and at 36 weeks a sonogram found indi to have something not quite right with her little heart. Indianna's 4th chamber got blocked and didn’t grow to the size it should have with literally no explanation or genetic reasoning behind it apart from - this is who she chose to be, this is how she decided to come to earth and she decided she wants us as her parents! What a blessing! We believe everything is happening for us not to us and we are living with this focus and listening carefully through our awareness. We are consciously creating a beautiful and hopeful future for Indi and the more technology that comes into the medical field, the more funding and the more awareness there is are all positive directions in finding a cure and new ways in enhanced treatment for children and adults with chds.
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Life is pure magic! It is a huge blessing every single day being here on this giant spinning ball we call earth! The fact we got chosen to exist here on this planet in the first place fills us with a tremendous amount of gratitude daily. A huge impact on our beliefs as a family and ways of seeing the world is down to Indi and Bodhis father who actually survived the tsunami in 2004 in Phuket, Thailand when he was only 14 years old. He has since taken me to the exact point that he ran from the waves with his family on boxing day where a switch flicked in me and I came to the realization that each and every single day should be lived with faith, intention, happiness, adventure and living in the present moment - we have all fooled ourselves brilliantly in thinking we even have control over the future! Reece being a tsunami survivor has shaped the way we bring up our children and see the world around us embedding a tenderness and a high vibration in our daily life along with never ever suppressing any trauma but learning how to navigate and heal it! This has been a key in unlocking happiness in having a baby with a chd.
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I hope our mindful and wholesome lifestyle along with being heart parents motivates and inspires many families going through a health journey with their children & to keep faith to help make parenting easier and more joyful! Life’s not always perfect, but it’s important to stop and enjoy those little moments with those you love - they actually turn into the big parts! We decide to share our gratitude filled life and hope to share our energy that uplifts you to! We hope to inspire you to shift your energy so that you can be as positive and present with your'e families living in the now as much as possible through a mind body and soul connection and healing trauma in holistic ways.
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Despite Indianna's condition, we will make sure we live in faith and positivity and on top of the medical procedures we will bring as many oriental and natural healing techniques that we have learnt over the last 7 years on our healing journey and apply them directly to Indianna. As Indi's parents we are and we will do everything we can to make sure Indi lives a wholesome, fulfilled, and soulful life. Our main goal (just like ours as a family) is for Indianna to explore the world and to take her on our travels around the globe (this is the meaning behind her name- Indi is named after the brave, courageous explorer Indiana Jones!!).
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This website is a platform made by us (Indianna's parents!) to bring an awareness of HLHS, DORV and the rest of the chd's, raise awareness of congenital heart defects as we were not aware before Indi was born at the statistics being 1 in 100 children in 2023/6000 children in the UK every year! We believe knowledge is empowering and liberating. Any parents who have a child with a CHD please feel free to get in touch! If you have had a prognosis during you're pregnancy please feel free to reach out we would love to speak to you we have been there first hand and know how agonizing and scary it can be!
We hope to throw so much knowledge, hope and inspiration your way and inspire others who may be going through health challenges with their children! I also hope our mindful and wholesome lifestyle motivates and inspires many families going through a health journey with their children to keep faith and to help make parenting easier and more joyful! Life’s not always perfect, but it’s important to stop and enjoy those little moments with those you love - its easy to get caught up in the fast pace of life and the list of curve balls thrown at us in life but its important to slow down as the moments that you long for deeply with family actually turn into the big parts that you cherish forever!
Thank you for joining us on our journey, keep praying,
Lots of love from our family to yours! God bless x
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Our vision
We want to empower you all with knowledge! 75% of CHD individuals live into adulthood. We would love to bring more awareness to this and show you a unique insight into our world with a single ventricle baby. Lets work together to close the gap and make it 100% of these courageous, soul inspiring babies make it to see adulthood and into old age.
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The cure is so near I can just feel it! In the USA at mayo clinic in Rochester they are currently doing clinical trials to make new heart muscle out of skin cells. This is for individuals in heart failure so their tissue will regrow! The HLHS program at mayo clinic in America has formed a nationwide research project and developed cell-based therapeutics to treat CHD, some of which are currently in clinical trials as I write this! The goal of HeartWorks is to create new heart tissue and ultimately cure congenital heart disease. Using autologous cells you can imagine planting it into an existing heart that is weak that is missing a part missing a muscle mass and strengthening it. They are literally rebuilding the heart. Their vision manifested and with the FDA permission in 2022 they started trials. We are praying that the next 5 years is a revolutionary breakthrough for single ventricle people.
In addition to this Dr Mark Rodefeld in Indiana USA has made a device called the blood pump which is put into a failing heart to give the individual a two ventricle circulation which is currently in animal trials and going through alot of fundraising. We need to be in a position to allow Indi to have these treatments or heart transplantation so we can be ready to give her every possible hope of longevity. We have had two video calls with him and seen the pump first hand!
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I have always thought that there is nothing more magical than being old here on earth. Becoming 'old' in our society is seen as a ''terrible thing' people even becoming worried if others know their age or dreading the fact their birthday is coming up and they are due to be 'another year older'. Being old is a blessing it is the world working in its truest nature - the circle of life. The only way forward on earth is to grow old! Be proud of yourself the older you get. It is the most beautiful achievement. I have a huge feeling of gratitude and fondness when another year around the sun comes up! We should all be so proud of our age and celebrate the fact we are getting older! Just as the amazon tribes see their elders as full of wonder and wisdom we too should live in the now and enjoy each and every moment leading up to old age! many people take the fact they are growing older for granted even normalizing the terms "I am going to do that next year"or thinking ahead years and years to purchase material things. Lifes magic is in fact all the experiences and memories made all those moments that you hold tight in your hearts forever! Don't wait until life is nearly over to start living! The certainty of life is really conditioned to be taken for granted you are meant to enjoy the magic of life each and every day! <3
Go fund me
We cannot thank indi's surgical team enough who continuously help indi through her heart challenges and have saved her life! However Indianna only lives with half of a working heart - the fact that medicine has rvolutionised isi incredible! we are so so thankful that i don't think we will ever be able to express it into words.
This go fund me is being set up for three main reasons:
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1. Indianna's heart healthcare - transplant /cure/ medical emergencies - indi lives a life in risk of heart failure at any point.. Indi has HLHS - there is no cure. In the event of heart failure we want to be ready as a family for heart transplantation. The nhs do not provide this treatment for single ventricle patients in the UK as the wait time is too long. This means we are ready to move to a place in the world which gives Indi the best possible chance at longivity as the life expectancy after all these operations even without heart failure is around 40 years old. The usa is also so close to a miracle cure for a single ventricle individual in heart failure. when this is ready we want indi to be there openly waiting to get healed. They are all currently doing trials. We are so lucky indi is born at this time in life! We are hopeful the cure is round the corner! Our goal ultimately is to get Indi to America or a country that will have treatment plans in place for her as soon as a cure is available which will give her every single opportunity to live until old age.
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2. Our family - to eliviate financial and emotional stress and supporting us to going wherever treatment is available in future. it is so important for us to be there with indi at every single appointment, medical interention and surgery. hospital stays are usually around a month long. It has also been put together for making amazing memories together - her cardiologist has told us each and every day is a blessing for Indi. These treatments mean indi can have a 'close to as normal' life. the last year has been intense to say the least seeing a nurse every single week for weight, bloods, oxygen stats, obs and having an echo at Great Ormond street every 2 -3 weeks. After indis 2nd surgery we are hopeful that appointments don't need to be less than every 6 months! These are the moments we would love to take advantage of and show indi the world! We want to take her on as many adventures while she is growing up. We are her parents who are now her full time carers and wouldn't have it any other way this also makes this more of a possible reality for us as a family.
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3. A % will go to Great Ormond street hospital - Without her wonderful team of surgeons Indi would not be here today! They are true miracle workers! We cannot thank them enough! We would also love to donate and collaborate with Great Ormond Street and specifically to the parents and team on cardiac bear ward so that their wards are as calm and as healing as possible so we can donate towards this vision around the UK on every heart ward. A % will also go towards the blood pump a cure for single ventricle patients in heart failure which is being worked on right now in Indiana USA - For the blood pump to get to human trials Dr Mark Rudefeld needs enough funds this is why we are also donating a % to the blood pump as it could be the key to the long waits on the heart transplant list if this miracle is available instead.
A % will also go towards little hearts matter which is a single ventricle charity in the UK. As medical treatments are evolving at such a fast pace if there are other medical organisations that align to us in future that we feel to donate towards we will update this site. It also keeps this site open and available to spread awareness worldwide. we cant thank you enough for your continued support.
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Please click this link to read Indi's go fund me story, please share this far and wide, with friends, family and beyond we can help more than we know ..........................................
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