A couple months ago our friends called and asked if we would be able to watch their two children with MLD while they went to a conference last week. This family has always been AMAZING examples to us. Five out of their six children have late-infantile MLD. Sam and Rebekah are the two remaining of the five. They had bone marrow transplants as very young children, which has allowed them to live longer and also keep some abilities that Eliza has lost. Sam is 16, Bekah is 14 and they are incredible.
It was an eventful couple of days helping three children with MLD but it was such a unique experience to care for three angelic children. They have more needs than Eliza – respiratory therapy, more medications and different care needs etc. It was our pleasure spending the time with them though. Caroline was a great court jester that entertained them by singing, playing Chutes and Ladders and making them laugh and smile.
I have always wondered how their parents have been able to handle everything that has been dropped on their plate and now I have an even greater appreciation for the unconditional love and constant care they have given their children. I get tired just thinking about how they have been living in the MLD world for almost 20 years – 3 times what I have! Fred and Emy, you are incredible! Thank you for trusting us enough to care for your sweet children.