Lora Holdgate – Trekfest

£250 Target/£735 Raised so far
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On 14th December 2018 my gorgeous little boy Alfie was born. Shortly after birth Alfie had prolonged jaundice and after numerous tests Alfie was finally diagnosed with Alpha 1 Antitrypsin Deficiency at 8 weeks old.

Alpha 1 deficiency is a genetic condition and Alfie produces a different form of protein in his liver. This means proteins become trapped in the liver and are not being carried to other parts of the body as it should. This can lead to liver damage and lung damage in later years.

The condition is classed as a rare disease as it is rarely tested for so is under diagnosed. There is no cure or treatment for this condition and it will effect Alfie for the rest of his life. He will be regularly monitored to ensure his condition is stable.

We are so lucky to have such a beautiful boy who thankfully is currently thriving. There is a huge fear of the unknown for us and will be throughout his life. There are so many families that are dealing with this condition and many going through the hardest time as organ transplantation is required. This charity helps and supports these families and is very worthy cause.