LEGEND T-SHIRT - LOUI LEGEND
We are fundraising for LOUI LEGEND to hopefully Help raise money to contribute for the specialist surgeries that will enable Loui to have a better quality of life.
50% of the sales of these t-shirts will be donated to the fundraising for Loui.
Loui is 3 and a half years old.
Loui was born with a life changing condition (crazily undetected till his birth) called Treacher-Collins Syndrome which 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 doctors in this country called an 'inoperable cleft palate'.
The tracheostomy itself requires 24hour care and needs frequent suctioning of secretions so that Loui doesn't affectively drown. When he was newborn this needed suctioning every 2-5minutes so you can imagine how incredibly full on this was.
Nowadays he is suctioned about every 10minutes which is still incredibly labour intensive but better than it was in the beginning. Loui has to have somebody by his side 24/7 to ensure he doesn't pull the tracheostomy out as without it he cannot breathe. Loui has had several emergency situations already in his life.
Loui's mum and nan are both trained in CPR and all Loui's medical needs.
Loui is fed a blended diet made by me in syringes through his gastrostomy every 2 hours 6 x a day and then 200mls milk through a pump every 4 hours 3 x a night to top the calories up.
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!
Loui has already had 9 anaesthetics in his little life and has lots more gruelling surgery and procedures to go through in order to have his palate repaired and his jaw brought forward to enable him to have his tracheostomy removed. A lot of these procedures cannot be done till he is older and some of them cannot be funded for by the NHS and some of them need to be done in America so we are fundraising indefinitely to get him all the procedures and operations he needs in his life.
the link to his go fund me page is:
Where you will be able to find out more about him if you want to.
The cost of all his required procedures is silly amounts but the next specialist surgery that we hope for him to have once his palate is repaired is the subcranial rotation jaw distraction surgery in Seattle, America that will hopefully enable him to be rid of the tracheostomy.
The estimate for this surgery alone which will be the seemingly unreachable amount of £214,000!
Loui's family have done so well so far due to a lot of incredible people fundraising but this is still a drop in the ocean of what they need they would be eternally grateful for any gesture/donation big or small from anybody that can help Loui get the surgery he needs that if successful would allow him to breathe unaided, talk to us, eat food, drink drinks, not require 24hour care, be able to play in the sea and sand and a multitude of other activities that people take for granted but would transform all of their lives.
Legend White or black t-shirt with mint writing.
Ladies size guide
SMALL - 8-10
MEDIUM - 10-12
LARGE - 12-14
XLARGE - 14-16
XXLARGE - 16-18
Men's size guide
Adults T-shirts are a softsyle 100% cotton fitted style. We recommend to size up for a baggier look.
Children's sizes are true to size
Turnaround is 14 working days.
Unfortunately free postage doesn’t apply for these charity t-shirts