The reason we are fundraising is so that we can pay for the specialist surgeries that would enable our little boy to have a better quality of life.

His name is Loui Legend (as he is our little Legend) and he is now 4 years old.

Loui was born with a cruel and life changing condition which was crazily undetected till his birth called Treacher-Collins Syndrome (TCS)

For Loui's dad and I (Luke & Karly), this was a massive shock and for a split second after the trauma of birth when Loui cried out, it was the most magical moment but this was soon to be snatched away from us as we realised something was wrong. At that point it seemed, our world came crashing down around us.

We were crushed and heartbroken as Loui stopped breathing and they rushed him away to intensive care to be resuscitated before we had even had a chance to see or hold him.

TCS affects the development of the bones and the tissues of the face. It varies dramatically in severity and Loui unfortunately has a severe case meaning because of his receded chin he needs a tracheostomy to breathe, gastrostomy in his tummy to feed and two bone anchored hearing aids (BAHAs) on a band around his head to hear. He has no middle or outer ears and underdeveloped cheekbones. He had what 4 different NHS doctors in this country called an 'inoperable cleft palate' which is why we sought advice further afield eventually finding an ex NHS surgeon miracle worker (Dr Sommerlad) who has the knack that so many others including those trained by him, don’t. Loui has so far had 3 surgeries on his palate performed by Dr Sommerlad which we have funded because although he very kindly waived his costs, we had to pay for the NHS theatre and bed at the price of £12,500. They suspect Loui will need another couple of procedures on his palate before its as good as they’re going to get it and the only way this can be done under the NHS is if we transition back to an NHS surgeon to do this.

The tracheostomy itself requires 24 hour care and needs frequent suctioning of secretions so that Loui doesn't affectively drown. When he was newborn this needed suctioning every 2-5 minutes so you can imagine how incredibly full on this was. Nowadays he is suctioned about every 10-30 minutes which is still incredibly labour intensive but better than it was in the beginning. Having a tracheostomy which is a direct route down into his lungs and bypasses his voicebox means Loui cannot speak, eat, drink, play in sand or water or ever be left alone.

Loui has to have somebody by his side 24/7 to ensure he doesn't pull or itch his tracheostomy out as without it he also cannot breathe. We have had several emergency situations when Loui turned blue and we feared we were close to losing him. Myself, Loui’s Dad and my mum are trained in CPR and all Loui's medical needs.

Loui is fed a blended diet made by myself and my mum, in syringes through his gastrostomy every few hours through the day and his calories and fluids are topped up overnight with milk feeds through a pump.

Loui has moderate hearing loss without his hearing aids and with them he has low level hearing loss so picks most things up but struggles with higher pitched sounds like ‘ssh’ and ‘sss’ so for example may mistake ‘fish’ with ‘kiss’.

Loui also needs to wear glasses as the shape of his eye sockets have caused him to have quite an astigmatism so he has to wear a lot of ‘head furniture’ bless him!

We first met Loui when he was nearly a day old, when we came back to the hospital with the grandparents who went in first. We were scared to meet him, not knowing at that point what to expect. When we got into the Intensive Care unit, there he was lying on his front as it was easier for him to breathe; this little innocent baby with a shock of black hair, unbeknownst to him at the beginning of a long and painful journey, emotionally and physically. We were both in such a state of shock and it was a long road to get to where we are now. Loui was transferred that night to Great Ormond Street Hospital and in the weeks that followed, was sedated with an endo-tracheal tube taped into his throat, feeding tube, monitor tube and drip lines; so many wires and leads coming out from our son. We couldn't hold him or even begin to bond as he was so dosed up with sedation drugs. Our hearts broke a bit more every day that we saw him and while the nightmare began to sink in.

Now, at just 4 years old, Loui has had 10 anaesthetics but this is just the start as he has lots more gruelling surgery and procedures to go through in order to have his palate completely repaired and his jaw brought forward to enable him to have his tracheostomy removed. And these are just the surgeries to better his quality of life and nothing cosmetic. A lot of these procedures cannot be done till he is older, some of them cannot be funded for or carried out by the NHS and some of them need to be done in America. The NHS said Loui was not a good candidate for jaw distraction so they wouldn’t even attempt this for some years. The basic procedure they do in this country only has 60% success rate and lots of the children undergoing the surgery have to have it repeated after failure causing scar tissue. Loui’s unique and intricate anatomy means there is simply no room for trial and error hence why we are fundraising for the far more advanced surgery in America that has had 100% success rate in getting the tracheostomy out of the severe TCS cases they have performed it on within 3 months of the surgery so it is simply a no brainer for us. We recently received the estimate for the subcranial rotation jaw distraction that will be carried out at Seattle Children’s Hospital which is an eyewatering £214,000 so we are fundraising indefinitely to get him this and all the other procedures and operations he needs in his life.

Despite all our little Loui goes through, we feel we have been blessed with his brilliant, loveable and funny character and he wins the hearts of whoever gets to meet him. Since he was 4 months old when we announced him to the world we have managed to muster up his very own 'Loui's army' and he has quite a following on his own Facebook group (Search 'Loui Legend' in the search bar and it will come up) and on his Instagram (@loui.legend)

I felt updating his own page at least a few times a week was the least I could do to thank all the many people who had supported us so far and Loui's cause has gone from strength to strength with his cheeky and cute persona winning so many people over. (I'm also a biased mum I know but he goes through so much for a little boy of his age with such a spark and smile about him that I feel he is so deserving of this level of adoration.)

where you will be able to find out more about him.

We have done so well to raise what we have so far due to a lot of incredible people fundraising for us but this is still a drop in the ocean of what we need so we are eternally grateful for any gesture/donation big or small from anybody that can help us to help our boy get the surgery he needs that if successful would allow him to breathe unaided, talk to us, eat food, drink drinks, not require 24 hour care, be able to play in the sea and sand and a multitude of other activities that people take for granted but that would transform all our lives.

Thank you very much in advance from Karly, Luke, Loui and all his family.