After a failed attempt last year (kiddos with bugs), we finally managed to catch up with the other Trisomy 9 Mosaic families in New Zealand. There are currently FOUR kids in New Zealand with T9M (at least that we know of), which is a lot, considering that globally each T9M child is literally one in a hundred million!
Having said that, there are SO many different types of genetic conditions (across 46 chromosomes or 23pairs, from small deletions or duplications, from partial to full copies, from balanced translocations to unbalanced etc), that separately they seem very very rare (about 155 T9Ms globally), while combined they are actually far more common that you would typically think. Not all of these are severe either...many people don't even know they might have some genetic anomaly themselves. Check out these facts....
So pretty special to have 4 in one place at one time! Interestingly enough, each one of these Kiwi T9M kids are about a year apart in age too. The oldest is Tegan at 4years of age (parents Jackie and David), then Amira who has just turned 3years (parents Andrea and Mo), our Nate who turns 2 this coming week, and Lily-Grace who is 10months now (parents Warner and Amanda). Three girls and one boy so far. All just beautiful kids, and so lovely to have everyone altogether in one place!
Check out some of the photos below.....
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| Getting to know each other better over lunch |
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| Celebrating Amira's 3rd birthday! |
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| Amanda feeding Lily-Grace |
Attempts at getting shots of us altogether...minus the respective photo-takers that is...
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| Mo with Amira, Jackie with Tegan, David with Georgia (non T9M), Amanda with Lily-Grace, and me with Nate! |
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| As above, but also with Andrea (Amira's mum on the left) |
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| As above, but including Warner (Lily-Grace's Dad), and Robin with Nate instead of me |
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| Kiddies having a play on the mat - Nate, Georgia, Lily-Grace, David holding Tegan, Jackie in the background, and Warner on the right |
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| Nate and Lily-Grace |
It was just so awesome to finally meet these gorgeous kids and their parents, after many months of chitchat over a closed Facebook group (which Jackie actually set up for T9M families all around the world). Amazing how different our respective families are, and yet how a shared diagnosis of Trisomy 9 Mosaic can bring everyone together so well :-). We spent a lovely lunch, shared in cake with birthday girl Amira, and spent a few hours talking, sharing stories, comparing meds, discussing development challenges and solutions, and watching our kids hang out altogether.
But one of the BEST things about the catch-up, was the opportunity to hang out with people who actually 'get it'. 'It' being the challenges of raising a special needs child, the emotional angst of wishing with all your heart that your child didn't have to deal with this, and the ongoing challenges with getting the support and help that our kids need from 'the system' (be that medical, developmental, or aid support). People who understand what words like cpap or airvo, desaturations, reflux, hypotonia, or what global development delay actually means, or who can use makaton signs! We even touched on what I personally find the most worrying of all topics (yes I know I've mentioned it before - it's a bit of a recurring worry!), around how we ensure adequate care for our kids when we are gone. We don't even know the answer to that. But as older parents, that was pretty concerning for all of us :-(.
But that last point aside, it was great to be able to relax and hang out with a bunch of other parents, who share in the below. Who absolutely get it. Who fiercely love their adorable kids, and who will do whatever it takes, to do the very best possible for them....
Thanks for a great day.....Jackie, David, Tegan,and baby Georgia,....and Andrea, Mo, and Amira,....and Warner, Amanda and baby Lily-Grace! It was just so awesome to meet you all - looking forward to next time!
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