Romeo was born with a rare form of CHD called Tetralogy of Fallot, affecting 1 in 3000 babies. At 4 months old he had open heart surgery to correct this however since then he has not thrived. At 10 months old and after suffering four cardiac arrests; Romeo was diagnosed with an even rarer heart condition which affects less than 1 in a million babies called Restrictive Cardiomyopathy.
The only treatment for this is a heart transplant, unfortunately a month after his 2nd birthday our world came crashing down when the two centres in the UK which both specialise in this turned Romeo down for a transplant. He is now under palliative care and we are unsure as to how many months he has left with us.
Despite everything Romeo has been through and continues to go through he is happy and content. He has fought so very hard to get to where he is now and as parents we could not be prouder of him and the strength he shows daily. We will ensure that with whatever time he has left with us he will know nothing but pure joy, love and happiness.
I will continue to document his journey throughout which you can find on the blog on this site and across our social media pages below.
Thank you for joining us on this journey,
Suzie, Jimmy & Romeo x
Talk about it.
By sharing Romeo’s story I hope to raise awareness around the importance of organ donation.
By becoming an organ donor you could save up to 9 lives, how amazing is that?
All you need to do is…talk about it. Share your wishes with your family around organ donation, it really is as simple as that. Your family will always be consulted when it comes to organ donation. By doing so you could help save a life like Romeo.
For more information about organ donation please click on the below picture to redirect you to the NHS Organ Donation website:
“Organ donation is not a tragedy but it can be a beautiful light in the midst of one.”
If you would like to help share Romeo’s story or are interested in fundraising