I slowly began to grow and things were looking good but when the doctors tried to take me off the breathing machine thinking I would be strong enough to do it all on my own I just couldn't manage...i had lots of tests which weren't very nice but i was always very brave so after a few weeks of waiting my doctor was able to find out what was so wrong and understood why I was so poorly...i have been diagnosed with UPD14 Paternal also know as Kagami Ogata syndrome and my doctor said this means I'm a very rare little girl..
My lungs are really tiny and my ribs are shaped like coat hangers restricting my breathing and preventing me to be able to do so without any help, this also means if I get even a little cold things could turn fatal for me..My tummy and liver grew on the outside of my body which is called an Exomphalos Major and someday when I'm strong enough I have to have a big operation to put it back where it's meant to be.. for the time being my Surgeon says I am far too weak and I need to be able to breathe on my own before this can happen..i have to be fed by a what's called a Nasal Gastric tube down my nose because I'm unable to swallow food and drink and I don't know if and when I will be able to learn to do so properly..Doctors know that my condition can cause severe physical and developmental issues but we have to wait and see how I grow before we know how things are and will be for me in the future..
I spent the first 9 months of my life in Hospital and the doctors didn't think I would ever make it home.. they tried to prepare my family for the worst but I never gave up and neither did they..things were looking bad but one day i pulled out my breathing tube myself, the doctors put me on another machine to hold open my lungs and give me continuous oxygen and for the first time I managed to stay off the ventilator..this was after 6 failed attempts and talk of a trachestomy becoming essential to keep me alive ! It took time for me to become stable on this machine but once I was my doctors finally spoke about the possibility of bringing me home one day..
I had to go to addenbrookes to be set up on machinery that could be used at home and mummy needed to be trained to look after me and get our house ready..It had been a long road but in April 2017 at long last i made it home !!!
I am on continuous oxygen throughout the day and I wear a special mask at night whilst on a CPAP machine which gives me the oxygen along with continuous pressure to hold open my lungs so i can get a good rest..The NHS are fantastic and provide these essentials for me but sadly they can't provide everything and i have needed lots of specialised equipment, which unfortunately costs a lot of money.
Originally in order for me to be able to live safely at my house I was lucky enough that costs were covered by the support of family and friends. Things then became much more difficult when I was in need of a specialised car seat that was suitable for all the difficulties that my Exomphalos brings with the practicality of being unable to use an everyday car seat safely like other little babies due to the harness and positioning that would indeed cause my tummy and liver damage and the same with the need for a push chair that could accommodate not only my Exomphalos but all of my oxygen equipment and other needs. These equalled £7000 which was impossible for my family to raise alone so they asked for help from our community. This go fund me page was created along with various fundraising events organised to raise this amount and amazingly thanks to the kindness of others we reached our target and I was able to get my equipment. This was life changing for me and has meant not only that I can get safely to my essential hospital appointments but that I can also see the outside world and experience things that seemed would never be possible although I have to be very careful with all I do.
As time goes by it's clear to see that sadly my needs won't end with the equipment and funds that have been raised so far and as I grow I'll need more and more things to help with my development and wellbeing so I'm having to ask for continued support.
Mummy says I'm a miracle baby and I've overcome all odds set against me.. that I am truly her little fighter and she will continue to do the same for me with whatever is needed on our journey. I am determined to continue to amaze not only my family, but my doctors, surgeons, consultants and everybody else that has and will come into my life.
Thank you for reading my story.
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