The Making of Loui Legend
Undiagnosed throughout the pregnancy, there had been a completely random mutation of a gene at conception which unfortunately caused Loui to be born with a condition called Treacher-Collins Syndrome. The chances of this are 1 in 50,000! 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 rescusitated before we had even had a chance to see or hold him.
Treacher-Collins Syndrome is very cruel and affects the development of the bones and other tissues of the face. The signs and symptoms of this disorder vary greatly, ranging from almost unnoticeable to severe.
Loui's case is unfortunately very severe so because of the small size of his chin he has had to have a tracheostomy in order to breathe. He has very deformed almost absent ears and no middle ear, so he has to wear a bone anchored hearing aid (BAHA) on a headband to be able to hear. He will have to wear this till the age of about 9 when his skull will be thick enough for the BAHA to be surgically fixed. As part of the syndrome he also has a cleft palate which makes it impossible for him to suck so he is fed through a naso-gastric feeding tube. Loui has downward slanting eyes as the bones of the eye sockets are so under-developed and he has very small cheekbones. He has a lifetime of hospital trips, procedures and operations yet most of the corrective surgery cannot be done until he is an adult and fully grown. Luckily Loui should be mentally and intellectually fine (although this is almost the cruellest aspect of the syndrome as he will be well aware of how he looks). Recently Loui had an appointment back up at Great Ormond Street Hospital where we were shocked again to find out his cleft palate is so severe that they've said it's irreparable so could affect his speech and being able to eat for the rest of his life! This is almost unheard of and the one operation out of the many he will have to go through that we thought would be the most straightforward one! We are in the process of getting Loui booked in for a second opinion however it has become clear to us that some of the treatments and operations available for him won't all be done on the NHS so we might have to look into fundraising to get him assessed and any corrective surgery carried out wherever in the world this may be.
We first met Loui when he was 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, unbeknown 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 in his throat, feeding tube, monitor tube and drip lines, so many wires and leads coming out from our son. We couldn't even hold him or even begin to bond as he was so dosed up on morphine to keep him sedated. Our hearts broke a bit more every day that we saw him and while the nightmare began to sink in. When Loui was 3 weeks old, against our wishes, he was taken down to theatre to perform a tracheotomy. The care and responsibility involved in looking after his tracheostomy is phenomenal and along with his feeding tube that he is constantly trying to remove, he requires 24hour care. If his tracheostomy was to come out or get blocked, it would be seconds before he would struggle to breathe, putting him in danger of brain damage or even worse. For this reason Loui has to have constant supervision and a trachy trained person with him at all times. For some of the care, like the daily tie change, Loui requires two people; sometimes even a third as he's a wriggly little boy! I have been trained up for all emergencies as well as Loui's nans. Loui requires carers to help with the night shifts but it is difficult to get as much support as we need, funded. Luke is self employed so having to go out and keep working while we struggle to make our flat that finally completed in the midst of all this, habitable ready for Loui's homecoming.
Loui will not be able to do some of the simple things that other children may take for granted like playing in the sand or going swimming and our life paths have now taken a sudden dramatic turn.
But, despite all of this, his character is beginning to shine through. He is strong and feisty yet so forgiving the moment unpleasant but necessary things are finished being done to him. Loui is truly the most brave little baby, going through hell everyday with what he has to endure. But he is such a loveable little boy and won the hearts of everyone who has met him so far in his short life. We just want him to lead as normal a life as we can possibly give him so we are asking for people to raise funds in any way they can. This would be to help us pay for his long term care, shortfall of carers, equipment such as a more portable suction machine and for all his future medical care, operations and procedures which will be ongoing.
We named him Loui Legend as he is our little legend...he came into this world and shocked us both but now we would never be without him. He's our boy. When he looks up at us with his bright blue eyes and beaming smile, that's all we see and makes all the hard work seem worth it. We just wish we could take it all away for him.
This surgery may not be for another couple of years/till he is old enough and is also dependant on the state of his palate repair (we already had to pay £12,500 for the theatre and bed for the first 2 despite the wonderful surgeon waiving his costs and because we dared to ask for the theatre and bed to rightfully be under the NHS for the 3rd op, they will have delayed it 1.5yrs by the time he comes to have it in November - and that’s if he’s not ill at such a rubbish time of year to postpone it till!!)
So here is the figure we’ve all been waiting for, for the subcranial rotation distraction alone it is estimated to be...
So far since we launched his GoFundMe page in May 2015 we have managed to raise the grand total of:
Minus the £12,500 we have had to fork out for what should have been under the NHS leaves us with a shortfall of:
That we still need to raise for this surgery alone, and that if successful will mean Loui will be able to
- sleep a whole night on his own,
- will not need 24hour care,
- will be able to breathe unaided,
- speak to us,
- eat food,
- drink drinks,
- go swimming,
- play in the sand and a multitide of other activities that people take for granted.
In other words it will totally transform both his and our lives for the better.
I hope this shows anyone who may be tired of hearing of our fundraising efforts why we have to carry on.
And because some people have asked me what the money is going toward and so far I have only been able to tell them that we are fundraising indefinitely knowing it was going to be a lot of money. But now we have a total to work toward.
Every penny raised so far has gone into an account for Loui untouched save for the palate surgeries he’s already had and not been used for help with long term care, shortfall of carers and equipment like we originally thought. That’s where our savings go.
£214,000 seems an insurmountable total to get to and it fills us with fear but it’s the generosity of other people that helps us cope with the magnitude of the situation and helps keep us sane so thankyou so, so much for that.
We could never have predicted then what a spectacular impact this little boy would have on all our lives. We had no idea he would live up to his legend name by such a young age or the way he would tenaciously overcome the curveballs thrown his way in the face of adversity, continually proving doctors wrong and marvelling us all round. And most of all we underestimated just how many hearts he would touch and how many people he would inspire along the way. We didn’t know it at the time but it’s him that gives us strength everyday to carry on no matter how painful and raw it all still feels because we know he is the one on the frontline of all the unpleasantness yet he's this bright, charismatic, spirited little amazing being that keeps on no matter what!
Happy 3rd Birthday to a very funny, sweet natured, cheeky, cute little boy that we’re lucky enough to call our son. And no we didn’t feel lucky this time 3 years ago but we certainly do now. ❤️
There have been many, many lows but surprisingly (I may have thought at the beginning), many highs.
I think back to those early days with horror; lack of sleep, suctioning every minute, keeping his ng tube down or replacing it multiple times a day, feeding every 3 hours night and day and then battling the reflux on every single one of them, battling the system and trying to fight for help we were entitled to but never got, fighting for the right equipment and supplies (which has been destroying and continues to drain me when my time would be better spent on Loui), having doors closed in our faces time and again of what wasn't an option treatment wise for him, finding strength to not take these no's for an answer and not settle for a negative prognosis from the doctors - I sadly had to learn this early on that you don't get anywhere unless you fight for it and those who sit back and accept what they say, don't get the best chances or care.
I've also learnt that Loui has made me determined. He's made me realise what most don't until they have a child and that is that you will never stop fighting for them. I will be going to the ends of the earth to get his difficulties addressed by the best and I won't be stopping till we've got the treatment he needs.
This started with the beginning of his cleft palate repair which after having our hopes dashed with 4 negative opinions saying it was inoperable, we thought was an impossibility for him.
But nothing is impossible as has been proven to us and for whatever reason (maybe the stars were finally in our favour that day) we were put into contact with the most wonderful surgeon in the nick of time before we made the trek to America to get him assessed.
That surgeon is Dr Sommerlad who despite being retired is still voluntarily changing lives all over the globe because he is passionate about doing it so the perfect person to tackle Loui's palate.
On the 15th January, after 5 long hours down in surgery, Dr Sommerlad achieved the impossible and performed a part closure of Loui's palate. In all his many years of operating all over the world, remarkably he reported that Loui's was quite unique. Not only was the tissue and muscle scarce, it was asymmetrical but by harvesting cheek tissue and performing some other intricate and technical procedures inside Loui's mouth, he managed to close the soft palate and even a layer of the hard. We are not out of the woods yet and there is high risk for breakdown or blood flow failing but this is beyond anything we could have hoped for. We have been told that no one can get near achieving the results he can not even by those he has trained and that cleft surgeons around the world benchmark themselves against him, so we are feeling extremely lucky he was able to perform his magic on Loui.
But above all, we are feeling immensely grateful and thankful beyond words for the fundraising making this possible. So again, thankyou SO much to all of you for helping us to change Loui's life for the better.
His second palate operation will be happening end of March. Seattle Childrens Hospital are still involved in Loui's case and will be the next step in his journey. They are currently redefining how to treat TCS children with more complex airway issues using groundbreaking procedures.
I'm proud of everything we've achieved for Loui so far despite everything going against us, not least having the time to research.
And that is totally down to my parents. Their unwavering support is second to none.
Their modesty is humbling and it's not just because they're grandparents and love us because they go above and beyond that duty. They have been our strength, our rocks and simply our saviours when we didn't have the energy or sanity. They've given up their house, time and lives for us and we couldn't have done it without them so it's the least I can do to give them a proper public mention!
But the person I am most proud of who is shining so brightly in the face of adversity is Loui, our beautiful soul, who has become quite a character, capturing the hearts of many with his charm, charisma and humour. He has quite a presence already for somebody so young and continues to bring joy everyday not only to us but to his growing supporters and followers of his group on Facebook. (If you're not already and would like to follow his progress, type 'Loui Legend' into the search bar.)
But to finish off this update almost to drive home the fact he is so deserving of it, we were incredibly honoured that Loui was nominated without us knowing for 'The Argus Courageous Kids Award' and he jointly won, "stealing the show" in the process whilst up on stage collecting his award.
Such an achievement for him at such a tender age.
Hey Karly, i've messaged you on FB and via this page (PM'ed you). We are filing a medical series for Discovery Network and would love to have a chat with you about Loui if you have any time today? My number is +44 207 033 1030 (extension 327).
Best of luck with everything and please keep us all updated on how the beautiful Loui is doing. xx
Been following this story. ..half way there...warms the heart. Hope little loui is feeling better...xxx
If there is anything I can do to help raise funds. Please do not hesitate to contact me. Good luck with the donations. Sending your family love xxx
Hi Karly I have just read your story about Loui, it's ironic because my husband and I call our little boy a legend after surviving double heart bypass as a baby. I have a job known as a community champion and I would like to talk to you about an awareness day and fundraising we can do. Please message me and I will PM you my number x
he is adorable here is a link I want you to see http://archive.firstcoastnews.com/news/local/story.aspx?storyid=30037 .........This is a friend of mines daughter who was born with the same condition and she is simply amazing and he will be too