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This is Leo, and his parents Maya and Rich. Leo was born in 2019, and enjoyed 24 blissful hours with his adoring parents before it became apparent that he was not very well. After being medi-Evac’d from the Cayman Islands to Miami and receiving expert care at Nicklaus Children’s Hospital, he was diagnosed with severe NKH and died peacefully in his Mum and Dads arms, just 8 days old. He was loved beyond measure and his parents are committed to making him proud by living a positive life, supporting others with neonatal struggles and helping advance NKH research forward. Over the lockdown, Leo's Grandma handmade beautiful cuddly animals, each carrying its own baby, which were auctioned to raise funds for essential research into finding a cure for NKH, and furthering Leo’s legacy. They raised well over £1650, of which every penny received will go to the NKH Research being done by Prof Nick Greene and his team at UCL. You can see the handmade animals, here: https://www.32auctions.com/Leoslegacy Thank you to the Lewis Family - we appreciate you so much! #forleo #babyloss #babylossawareness #parentingafterloss #nkh #nkhbaby #leoslegacy #nonketotichyperglycinemia #nkhawareness #ifhnkh #metabolicdisorder #fundraising #glycineencephalopathy #theMikaereFoundation #nkhcansuckit @caribbeansnowflake

Thank you Infinis! Infinis is a British renewable energy group based in Northampton. They produce electricity from captured landfill and mineral methane. Mikaere's grandfather worked at Infinis prior to his retirement, and over the last six years, Infinis has been a huge supporter of NKH Research. They recently donated £500, which will be sent (every penny!) to UCL, and the NKH Research team there. Thanks Infinis - we appreciate you so much! Would you be willing to put the Mikaere Foundation forward for your workplace Charity of the Year? Would your workplace be willing to partner with us? Let us know! We'd love to work with your organisation, and help them meet their Corporate Social Responsibility (CSR) goals :) #nonketotichyperglycinemia #nkh #nkhawareness #ifhnkh #metabolicdisorder #glycineencephalopathy #nkhcansuckit #fundraising #theMikaereFoundation #csr #csj #corporatesocialresponsibility #charitypartner

This is Laura and her sweet 3-month-old baby Teo. Teo has NKH, and for her recent birthday, Laura asked for donations to NKH Research, raising over £800! Every single penny goes to NKH Research, to the team under Prof. Nick Greene at UCL. Happy Birthday, Laura! We appreciate you so much! #nonketotichyperglycinemia #nkh #nkhawareness #ifhnkh #metabolicdisorder #fundraising #happyBirthday #glycineencephalopathy #theMikaereFoundation #nkhcansuckit @laurachown

Wish you all a very festive holiday season! We're so grateful for all the love, support, and kindness we've been shown these last six months. We've raised thousands of pounds already for NKH Research, you've all been so supportive of the NKH Charity Cookbook, of Eva and Charlie (still!), you guys are *dream* supporters! Thank you to everyone who has undertaken challenges, made one-off donations, and an extra special thank you to our reoccurring monthly donors - we appreciate you so much! We really weren't expecting to start a charity, so to have had such a successful start out the gate has been so validating. We're the only UK NKH charity where 100% of all donations received go to NKH Research, all the overheads are covered by the founders. It means we can do more for NKH Research, and your donations go further. Happy holidays everyone - we're so grateful you're in our corner x #dreamTeam #nonketotichyperglycinemia #nkh #nkhawareness #ifhnkh #metabolicdisorder #teamMikaere #glycineencephalopathy #nkhcansuckit #fundraising #theMikaereFoundation #raredisease #cureNeeded #complexmedicalneeds #fundraising #grateful #happyHolidays

After months of work, the NKH Charity Cookbook is NOW AVAILABLE on Amazon, hurrah!! UK/EU: https://amzn.eu/irjuCTs USA: https://a.co/d/0iGbUga The NKH community, friends and families have contributed over 150+ recipes for the NKH Charity Cookbook. It's home cooking at it's finest, with recipes submitted from all over the world. Available in Kindle and Hardbook versions. Thank you to everyone who has contributed a recipe, we couldn't have done this without you! As always, the royalties of this book go to charity - The Mikaere Foundation is a registered charity in England and Wales (charity number 1200720). It raises funds to support research into NKH. It's the only NKH charity in the UK where 100% of the donations raised go to NKH Research. Get your copy now! #linkinbio #CharityCookbook #perfectChristmasGift #fundraising #nonketotichyperglycinemia #nkh #nkhawareness #ifhnkh #metabolicdisorder #teamMikaere #glycineencephalopathy #nkhcansuckit #booksforWednesdays #teamMikaere #theMikaereFoundation

Happy Giving Tuesday! Help us fund a cure for NKH this Christmas. Today is the international day of giving support to the causes you love. It's a perfect time to consider making a donation to the Mikaere Foundation – especially as we have such a crucial task ahead. Right now, we are on the cusp of change. Gene therapy research being done at UCL and Notre Dame has shown success in mice and we are on the verge of having this LIFE-CHANGING research picked up by a pharmaceutical company. Our kids with NKH deserve so much more than what they're given. So please, give your support and donate on this Giving Tuesday. Help us fund a cure. If you have recently donated, thank you so much for your support. We appreciate you! If you are unable to donate at this time, you can: - Set your Amazon Smile charity to the Mikaere Foundation - Review Charlie the Crow or Eva the Adventure on amazon, every review helps! #nonketotichyperglycinemia #nkh #nkhawareness #ifhnkh #metabolicdisorder #teamMikaere #glycineencephalopathy #nkhcansuckit #fundraising #charliethecrow #childrensBook #booksforWednesdays #teamMikaere #theMikaereFoundation