My son Max was born early and we thought that was going to be our biggest hurdle. Consistent low platelet levels lead us to being cared under Great Ormond Street Hospital in London. After months and months of checks and test we received the news that Max was diagnosed with a rare genetic condition, Dyskeratosis Congenital. He faced many challenges and side effects due to this condition, he desperately needed a bone marrow transplant, we were told there was not a near match in the world for him, how could this be? We were faced with dread and fear. The day came where he was deteriorating more and more before our eyes, leading him to be put int an induced coma to protect his vital organs, his lungs were at risk of bursting at this point as he had contracted a type of pneumonia. To be told our son was the sickest child in the hospital, we knew we were in trouble and every avenue had been taken… we had to make the decision not if but when we would consent to turning his life support off. On the 31st of May 2017, we said goodbye to our beautiful baby boy for the last time, softly kissing him on the forehead and holding his hand tight, we allowed him to feel peace and serenity and we will forever cherish his memory. We love you Max, To Infinity and and Beyond x.
Max Hilton
Dyskeratosis Congenita
