Eli and Ella are doing well but this week we read and see some MLD - TopicsExpress

Eli and Ella are doing well but this week we read and see some MLD kids who may be having a tough time, and may be having disease progression. This brings us back to reality all too often so we just try to focus on the now and today... The fact that they are doing better than expected at this point in the disease is a blessing. This disease is cruel and brutal ... We pray we never experience those parts. One great thing this week is Eli had a fun Scouts tour planned. They had a great tour of Wegmans and got to make some awesome food! They were kind enough to let the siblings join in too so Ella had a blast:) I hope everyone is enjoying the weekend ...please say a prayer for all these kids suffering from this horrible disease. No child should suffer and no parent should feel so helpless... Its torture. Thank you

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