Nate's Journey: One in a 100,000,000

Well it's official, Nate is one in a hundred million! We knew he was rare, but THAT rare?!

Check out this video of Holly Abigail Kitchen, a wee T9M girl who lives in the UK. Her brother Louis produced it - to bring more awareness to T9M and the impact on family life. Louis worked out that Holly is one in a hundred million, and actually Nate is likely to be even rarer still, given that T9M males are less common than T9M females.

Holly has the exact same diagnosis as Nate, and is 30% affected tested by blood (Nate is 27% affected). Of course no two T9M children are the same, and the affected parts can differ markedly. That is why doctors refrain from giving parents much in the way of expectation - in reality children can have very different medical challenges, and the developmental difficulties can range from mild to severe.

Click on this link to see Holly

So there really is no way of knowing what is to come........it's all just part of the journey.......yep, that's something that's readily accepted by any parent, not to mention those with a child facing hardship. Ah...'yes NO', as us Kiwis would say!

Over the past week or so Nate has been a bit off colour. Last week we had a few chunders of worthy note, and the kitchen floor and table needed a solid wash as a result. Then this week we had another couple of chunders, more floor washing, and a truckload of laundry too (you know, more than normal!). Some sort of gastro as the nappies weren't so pleasant either! Prompted a trip to A&E at Starship to make sure we weren't dealing with another UTI or anything more sinister, but nope just your common gastro!

Hanging with Nanny Sylvie at A&E Starship

That combined with a cold, a cough, some teething, and an ear infection, have made for a some what irritable wee man over the past week (Nate that is, not Robin - although to be fair, with all the sleepless nights that we have had over the past two weeks, some grumpiness on the part of everyone has been more than fair!).

Pleasingly though, we seem to be just about through that now, and back into photogenic and happy camper Nate...here he is turning on the charm once more....