Sending Newborn Boxes

Today I sent out two more care packages to newly diagnosed EB babies. My family and I are contacted by the DebRA of America nurse with contact info, etc. Many people do not realize what it takes to care for an EB baby/child. Living with EB can dictate what you do from day to day. Band-Aids are not to be used on the skin because of the adhesive. Pulling a band-aid off can mean pulling the skin completely off. Special bandages are used, similar to those used for burn victims. Woundcare companies like Hollister Woundcare and National Rehab send boxes and boxes of special bandaging to put in the care packages. Many times, Maxx will help me pack the boxes. He likes to put the teddy bear in, as well as the blanket. I often get phone calls and thank you cards for sending the boxes to the families.........I can't begin to explain to anyone the amount of satisfaction is brings my family to have helped another EB family!