For 800 children in Morocco, damaged or burnt skin is genetic, irreparable, and needs to be replaced. Mohamed-El Kotbi, 17, and Driss Hamouti, 21, live with this tragic condition. Due to a disease called Xeroderma Pigmentosum – which medical professionals generally shorthand to XP – they are prone to blistering and burning of their skin and eyes upon the slightest sun exposure
Posts by Rachel Woolf:
BMX bicycle racing is a way for the Raum family to bond. Timm, father of 3, is the track operator for Hagerstown BMX and races competitively. His wife, Tina, is the office manager. Together with other volunteers, the Raums help run Hagerstown BMX in Hagerstown, MD.
Mick Smith’s family is hoping to put a name to the progressive neuromuscular disease that is affecting this 12 year old triplet. Whole exome sequencing is the test that might give a name to his disease and possibly help doctors treat him. The knowledge gained from the test might not lead to a treatment or therapy but at least could help doctors manage his care.
This test is not always covered by insurance because it is so new and in fact the Smith family’s insurance is not covering the cost. They chose to do the test anyway and will get the results in a few more weeks and will then hopefully have a name and possibly a treatment for him.