Prayers and Donations for Tucker Lynn Nance

UPDATE 9/1/24: Big things are happening with Tuck! He got his tube out at 9:16 this morning and has been doing really well! His canula is still giving him a rate of breaths, but he has been breathing over that. Hopefully he continues to do well!

We officially have a diagnosis. He has Nonketotic Hyperglycinemia (NKH). It’s a very rare autosomal recessive disorder that is passed down, which means I carry the gene and Tyler also carries it. Basically Tucker’s body can’t get rid of glycine like it should and it causes some major problems, which is how we ended up here. There is no cure for it, but there is treatment which he is getting. Over all there really is not a lot known about it because it is so rare and many of the cases are different, time will tell the severity and complications that may come.

Please continue to pray for our boy, there is still a lot of unknowns in front of us!

Here is a link with some information about NKH:https://www.ncbi.nlm.nih.gov/books/NBK1357/

This is my nephew Tucker Lynn Nance Samantha & Tyler Nance beautiful baby boy!! We have had a lot of family & friends what can they do?? If you can make a small donation it would be greatly appreciated!!! If not we just need you to pray!!!!! Some of these test they are doing can take up to 4 weeks, he will continue to be in PICU the whole time, but mom & dad get to stay in room with him. We will keep everyone updated!!!!

WE NEED SOME BIG PRAYERS. We had to bring Tucker to the ER yesterday he was having a hard time breathing and very lethargic/unresponsive. They got him stable and sent to PICU yesterday to try to figure out what’s going on. Last night we decided to make the transfer to Baton Rouge to the children’s hospital because they are better equipped to help us figure out what’s wrong with him. So we are here just waiting. Y’all keep him in your prayers, along with us and his team that is caring for him and I’ll keep yall updated when we find out more. Our hearts is broke seeing my baby like this.

UPDATE 8/16/24 12 PM: Not much has changed, he is responding more to stimuli which is hopeful. Yesterday he had an MRI and EEG done. Preliminary results from those was not looking great and there was some sort of damage to his brain. Tucker also had a central line put in to able to draw blood more easily to run the tests that are needed. His doctor came in during rounds this morning and after speaking with the neurologist they can’t say exactly whether he has some damage from a lack of oxygen or a metabolic problem. They are running blood test to figure out what exactly is going on. In the meantime he said he did want to start turning down his vent and cut out his antibiotics if his cultures at 48 hours come back negative (that’ll be this evening sometime). It’s just a waiting game at this point. Please continue to keep our boy in y’all’s prayers