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Miraya's hlhs fight

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On 13th november 2018 my partner went through what no mother should, her beloved son oscar nally sadly passed away at only 6 weeks old to meningitis and sepsis after bearing that massive heartache we since found out that we had been blessed with a second child, until the 20th november 2019 when our lives came crashing down around us this was the day where we sat with specialists from alderhay hospital in liverpool and our baby girl due on 14th april 2020 was diagnosed with a rare congenital heart defect called Hypoplastic Left Heart Syndrome (HLHS). Hypoplastic Left Heart Syndrome is a rare, complex, congenital heart defect. Infants with HLHS are missing critical portions of the left side of their heart, meaning the heart cannot effectively pump blood to the rest of the body. The only way for our baby to survive is through a series of three palliative non corrective open heart surgeries the first being at birth then 3 to 5 months of age and finally 3 to 4 years old. The aim of these surgeries is to send blood directly to the lungs without the heart having to pump it there so that they can use the right side of the heart to provide blood to the rest of her body. The consultants were very thorough and were great explaining everything to us, they gave us all scenarios and answered any questions we had, we have been told that only around 80% of children with this condition will survive each surgery and that she would have limitations and a limited life expectancy of only 25 years. Miraya will have to be born in liverpool which is a 2 hour drive from our home and will be expected to stay in hospital with around the clock care possibly until after her second surgery which could be up to 6 month or more before we can bring her home. although we were given the option to terminate the pregnancy and told that there is a real risk that miraya may not survive all three surgeries and that would be devastating for everyone especially Georgia after everything that has already happened we have made the decision that our baby deserves every fighting chance in this world to live. My name is adam and I'm miraya's father, I have made this page to plead with help towards all the costs of travel and care for my baby girl and for my partner I am doing everything in my power to take away as much of the stress away as I can but I've realised I can't do this all on my own with only 1 wage.  We would all be very very grateful for any help you could offer even if it's only a quick share of this page  Thank you from the bottom of our hearts  for reading our story and for any help you can give us.

Organizer

Adam Gray
Organizer
England

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