Bring me home, strongly fighting

I have been born with really rare syndrom called Kagami Ogata or Upd 14 syndrom paternal, that is my 14th chromosome was mutated, well to be more precise I have my father y chromosome duplicated and deleted my mother x chromosome

 

This syndrome bringing respiratory problem, mental delay, swallowing problem and omphalocele hernia 

 

I am the first Irish baby with this syndrome and my future and growing is unkown

 

 

My mom and dad wanted me for long

time, only that they found out they will have me in November 2019 and hopefully I will be home on my first Christmas 2020

 

Everything was so perfect until first scan when they immediately discovered some anomaly on my stomach

 

Scan by scan they diagnosed me omphalocele, that is that all my organs supposed to be outside my body

 

One month before my birth my mommy and daddy had a apointment with specialists that give them horrible news, that is I have 2 percent of chance for survival after birth

 

My mommy had a very hard pregnacy as she was carrying 11 litres of water in her stomach and they needed to put big needle to her belly to take out extra water 

 

So as it was planned for second time to take out the water from my mommy belly I decide to come to see my parents earlier as I was sorry for my mommy 

I was born one month premature but I was born by God grace with my belly closed and organs inside my body that was miracle, but since first day I have been intubated as I couldn't breath by myself and not promised good future or to survive 

 

I was transfered from Coombe hospital to the Crumlin to the PICU on intesive care, meetings after meeting with doctors didn't promised me good future but my mommy and daddy didn't giving up on me, as I was invasive intubated for 40 days, extubation was very risky for me, but first days I manage to continue on non invasive life support, as I am currently fighting hard  for my life and trying to get as soon I can to my home sweet home...

 

My mommy will have to quit the job despite she wants to work as she will be taking care for me 24/7 and my progress and health

 

I'm asking you for spare one drink or coffee price donation to help my mommy and daddy to get one step closer to our hom,  safe and equipped  for my needs, as my needs bringing mental delays and respiratory problems associated with this super rare syndrome and I will go probably go home with homecare package and nurses that will mind me until I get stronger, that's why we need bigger space for all equipment that's is needed for my progress and recovery 

 

 

Also I wish that you pray for me so I can get stronger and my small lungs get better and stronger so I can go to my far away home 

 

 

Thank you all good people for your support and prayers from Qi Qi

 

Thanks for reading