Nori Love tongue reduction ❤️

Many of you will already know and love my gorgeous niece Nori Love. She was born 8 weeks early in January 2022 with a rare and not very well known syndrome called Beckwith–Wiedemann syndrome. She spent 4 weeks in NICU and was diagnosed with the syndrome due to her enlarged tongue and kidneys and the small pits in her ears. This affected her breathing and ability to suck a bottle or boob! She was fed Hayley’s breast milk through a feeding tube and the doctors told them she would probably need that for the foreseeable! Nori has absolutely smashed EVERYTHING the doctors said she wouldn’t do! She now takes a bottle and also sucks on every single food imaginable BUT she can’t eat solids! Nori has a higher risk of kidney cancer while she is young and is scanned every 3 months to check if anything has changed! The next step of Noris journey is to have the tongue reduction surgery! This will hopefully enable her to eat solids, it will prevent jaw problems and also help her teeth to grow correctly. This surgery can be done now she is 1 and strong enough. The problem is the NHS can’t give a date as she’s not classed as priority. The operation will cost roughly £15,000 plus accommodation cost for the time in London, travel and food! Our family believe she is a priority, Nori wants to speak, eat and communicate just like the rest of us. If the NHS give us a date in the meantime the money could be used for transport to London and the rest donated to Great Ormond Street in London where they do fantastic things for so many poorly children! If you could just support us by donating to the fund it would be more than appreciated by our family! It would also help raise awareness for the syndrome which isn’t well known and also help people to understand! We are also planning a fundraiser to further raise awareness about the syndrome! Thank you for reading the story about my beautiful niece ❤️

Update- Our beautiful Nori has come on leaps and bounds since her first tongue reduction surgery in March 2023. She has now been to London for post- Op appointment and as the surgeon suggested she now needs her second tongue reduction. This is vital for Nori as they have been told her teeth are growing forward and her bite is misaligned. On the NHS we have to wait over 6 months, possibly longer. If we went private we can get Nori in as quick as next week! We were so overwhelmed and grateful for last time but we need more support. If Nori does not get this done ASAP this will cause knock on affects with her jaw, teeth and speech. We need to act fast! If you can give anything at all we would be forever grateful. ❤️