The beginning of 2013 has been difficult. Nine children died in my circle of Leukodystrophy friends, four in one week's time including Jo-Jo Garcia, a member of our band. As an affected family we have our personal story and then as a community we have our group story. They are separate but equal. We feel immense sadness and grief when one falls. Our empathy is tangible; mine is asleep in my lap right now. It is the course we are on; none of us can change this except through the strength of our kids. This is when we lean on them. Tamsen and Kenan guide me through days like these.
The best we can do right now: Please support Expanded Newborn Screening for treatable diseases in your state but do not wait for it. Illinois included Krabbe as part of its NBS in 2007. Kenan was born in 2011. It has yet to become available to the public and in the interim, we have another diagnosis in a neighboring suburb. You can order supplemental screening directly and have your baby tested for 60 fatal but treatable diseases. Not your typical shower gift but potentially life altering through knowledge and choice. Please visit Hunter's Hope for information on both: