On the 18th December 2020, at 31 weeks pregnant, we had quite the surprise! Our beautiful 3lb 5oz baby boy decided he wanted to be here before Christmas! From day one he proved to be a little fighter. We never knew until recently that the name ‘Louie’ means ‘famous warrior’ and my goodness did he live up to that. The bravest, strongest baby boy you could ever imagine.

For those of you who have followed his journey you will know that he was born unable to swallow, requiring TOF surgery the night he was born, he then had a 72 day NICU stay with two further surgeries and a very rare and random genetic diagnosis of a 10q26 deletion. I won’t go into detail on these but if you want to know more you can take a look at his Instagram page: https://www.instagram.com/louie_our_little_fighter/.

Louie finally came home from NICU on the 27th February and we were so blessed to have such an unbelievably incredible, happy, inquisitive baby. Despite medical professionals doubting him due to his deletion, time and time again he smashed every single milestone. He was breastfeeding like a champ, loved playing with his toys, grabbing on to anything and everything, putting anything he could in his mouth, and he had even mastered tummy time! He had a cheeky little personality, he made us laugh every single day, he gave the BEST cuddles in the world, and he was quite the chatterbox! He was also now over 12lb, over 4 times his birth weight and just about to start weaning! Such a hero!

Two weeks ago, on Saturday 3rd July we had noticed he was sneezing a bit and had a slight cough. We took him straight to the GP who said he was absolutely fine and to go and enjoy our weekend. That afternoon we ended up in A&E as his cough and breathing worsened. On Thursday 15th July, our little ray of sunshine passed peacefully in our arms. We still can’t really believe it?! What exactly happened in those two weeks isn’t completely clear and we are waiting on some further investigations, his post mortem and an inquest. We don’t understand how everything changed so quickly and how our entire lives were turned upside down in such a short space of time. I don’t think we have quite processed it and I don’t think we ever will, there is no question that he should still be here. We just want our beautiful, blue eyed, happy baby back. We miss him more than words could say.

We have had a few messages from people who would like to do something in Louie’s memory and we feel that this is probably the easiest way. We really do not expect anything and feel a bit awkward doing this, but rather than sending flowers or anything like that, if you would like to honour Louie there are two things we will be using this GoFundMe for:

1. In Louie’s last days the team at Great Ormond Street Hospital helped us to make some amazing moulds of Louie’s perfect little hands and feet. The company ‘Feet-1st’ are able to turn these into a bronze unbreakable sculpture which we can keep forever. https://www.feet-1st.co.uk/.

2. The remaining money raised through this page we would like to donate to charities that have helped us through this journey. The three main charities are listed below. There will likely be others as next week the hospice is connecting us with communities who will support us with bereavement and pulling through this time. We will update this page as things progress.

• Unique: https://rarechromo.org/. Unique is a small charity supporting, informing and networking with families living with a Rare Chromosome Disorder.
• HADDs: https://www.hadds.org/. The EBF3-HADDS Foundation was created to promote awareness, research, and support for a rare genetic syndrome discovered in 2016.
• TOF: https://www.tofs.org.uk. TOFS (Tracheo-Oesophageal Fistula Support) is a charity dedicated to improving the lives of all who were born with the TOF condition.

Thank you for being you Mr Louie. We are the luckiest in the world because you chose us to be your parents <3