Hope for a alagille warrior with a death sentence

Logan has an awful hereditary condition called Alagille syndrome. Which is a jag 1 jean mutation we didn't know anything about until he was born and didn't breath. He was rushed to Birmingham ICU hours after birth. Alagille syndrome is a genetic condition in which a person has fewer than the normal number of small bile ducts inside the liver. Bile ducts are tubes that carry bile from the liver cells to the gallbladder and eventually drain into the small intestine. Bile is a liquid produced in the liver that serves two main functions: carrying toxins and waste products out of the body and helping the digestion of fats and vitamins A, D, E, and K. In severe cases the liver can stop working and a liver transplant is necessary. Which is sadly the case for logan. In Addition to liver disease heart problems are one of the most common features of Alagilles. Logan has severe heart defects and narrowing of the pulmonary arteries. A blood vessel the carries blood from the heart to the lungs. Logan has severe cardiac abnormalities he has pulmonary Atresia with VSD his pulmonary Arteries are very small but he has 2 fair size MAPCAS supplying his lungs. (MAPCAS are Arteries that develop to supply blood to the lungs when the pulmonary circulation is under developed, narrow, or non existent.) His blood is only half oxygenated because his blood mixes together making purple blood because of 2 holes in his heart so his oxygen levels are only between 50% and 82% he also has a heart murmur. At the moment we are waiting for the specialist in California (Dr Hanley) and (Dr feinstein) to look over logans scans and see if Logan will be able to have any help surgically in the future on his liver and his heart as Birmingham have now said they can not and will not opparate on the heart or liver as they are both too poorly. Alagilles also affects many other parts of the body such as eyes, hearing, bones, brain, kidneys, cause strokes and aneurisms and so on. Logan has odd shaped vertebra we wont know any other effects until he gets older. Logan has spent every day of his young 15 months of life fighting to live and struggling with all of the issues that come with this condition. Logan is the roughly the size of a 6mth old (13lb 9oz lbs) as his liver doesn't work he can't absorb food doctors say he has failure to thrive. Logans liver can't get rid of the bile in his body so it comes up to the skin and burns and itches to the point he itches himself raw and bleeds. I spend every day with him fearing it could be the last time I get to see his beautifal smile, His heart and liver will only get worse without sergary. I want to give Logan a life to remember and help to pay for travel expenses to hospitals and just give him some sort of normality in life. He is so ill yet he is so happy he loves everything about life, he has taught me so much and even on my darkest days he does something cute and makes me laugh. So if he wants to fight to live I will fight right by his side with him and for him. Any help would be lovely thanks from me and logan xx WE HAVE BEEN GIVEN THE DEATH SENTENCE FOR LOGAN NO HOSPITAL IN THE UK WILL OPPARATE WE NEED TO GET TO AMERICA TO GIVE MY BABY A CHANCE WITH AN ALAGILLE SPECIALIST!!!! PLEASE HELP ME SAVE MY BABY Disclaimer: This content is exclusively managed by Caters News Agency. To license or use in a commercial player please contact [email redacted] or call +44 (0)[phone redacted] / [phone redacted]

Donations

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  • Anonymous 
    • £30 
    • 9 mos
  • Anonymous 
    • £30 
    • 10 mos
  • Ann Ellis 
    • £60 
    • 11 mos
  • Mark Millar 
    • £5 
    • 12 mos
  • Carolyn Burge 
    • £15 
    • 12 mos
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Organizer

Gemma Channing 
Organizer
Exeter, South West England, United Kingdom
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