Work and World

Nova: Our Girl With A Mystery Condition | BORN DIFFERENT

[Music] we’ve had genetic testings there’s no like name for what over hairs it affects her hearing breathing speech and her eating with a child with special needs you don’t have an idea of what their future holds I found myself looking online and the video that spoke absolute crazy amounts to me was and a blogger called Maremma backup Studios actually organizing in surprise and the wrong message cute she’s so sweet [Music] nova is that your standard two-year-old right now she is a full of energy she loves to dance she loves music she loves photos and being around people yeah the life of the party yeah life of the party that’s our girl Nova was born with a cranial-facial difference currently her condition is undiagnosed we’ve had genetic testing so there’s no like name for what Nova has that affects her hearing breathing speech and her eating so that’s why we had the truck EOS to me and her g-tube she has a severely reduced hearing because she has the jaw crushing her airway and in the palate affecting things like speech in eating and swallowing she is not able to do all of those things that we just naturally do ourselves so we were just sitting up Nova’s feed and she’s feed via a pump and a g-tube in her stomach thank you yeah and the side lunchtime it seemed all normal at first we’re doing this scan that showed that she might have some facial differences we thought there would be quite small we didn’t get to bring it over home for 101 days yeah when we first left the hospital of Nova we felt so good to be free because if something felt so confined so long but also terrifying that we might not know what we’re doing – yes thank little enough now goes great way to get that foot it I think this how all parents feel when they first go home yeah hey do you want to take one of me with the biggest sort of hurdle that we’ve had apart from all of her surgical procedures and going through that is just a communication like it’s been so challenging to learn a completely new language to be able to communicate with her read a book she’s not able to have a jaw opening wide enough because of the small jaw we’re not able to fix her palate which is delayed which means his speech is delayed her signing because she’s signing a lot and it just means that we have that communication with her and it’s been so challenging because for the longest time there’s been like no back-and-forth at all [Music] co-signing is like increased tenfold now show her one new sign and she was repeated straightaway and almost remember yeah I would say our biggest achievement was her walking that was your major because I didn’t we weren’t sure she was ever going to figure that out when we finally got her to walk it was like whoa amazing with a child with special needs you don’t have an idea of what their future holds and so I found myself searching online for videos just to sort of have an idea about what’s next what would the future hold for us in for Nova and you know are there are people out there living a life like this that are happy and I found myself on the Barcroft TV YouTube channel the video that spoke the most me was a beauty blogger called Maremma she has a hearing impairment she has facial differences and a Trekkie and she’s also 21 living her best life I mean she has she explains that she has had days but all and all her family are supportive and she does it you know she’s not bought back by this difference it all she is just herself that’s all I want for Nova so far crafts to do is actually organized a little surprise [Music] I’ll stop her [Music] she’s so cute she’s like sweet oh you look so cool she loves the camera she loves to entertain she loves people so that’s why we hold her bed yeah I will be hold about we want her to feel like she can do anything so he’s added those Instagram probably about a year ago nothing people are quite drawn to it yeah people are definitely over her yet the pages evolved over the last year it’s become more of a awareness page for people like Nova people with facial differences and educating people that like our daughter Nova is first and foremost just another little girl just like all other two-year-olds I want to educate people that you don’t have to be afraid to say hello to someone like Nova you can honestly just say hi she’ll say hi back she’ll probably run up to you first and give you a giant cuddle you want to go to the park Baba we’ve started to think about Noah’s future and schooling school and surgeries and that’s sort of a little bit scary but we sort of just deal with what we’ve got in front of us right now one day at a time we’ll figure it out when we come to it [Music] [Music] I hope that we can change people’s perception of normal because you know this is our normal it may not be your normal and it may be different to your normal but I just want people to see what there is for us you
Video source:

Related Articles

Back to top button