Artist: Brandy Christian
Etsy Shop: www.sewcuteshop.etsy.com
I started sewing last year and fell in love. My grandmother taught me “old school,” and I take my time and do finishing by hand. All my items are handmade and sent out with a smile guarantee.
Earlier this year, my sewing took on a whole new meaning/mission when Riley, my best friend Teresa’s son, was diagnosed with adrenoleuokodystrophy (ALD). If you have ever seen the movie Lorenzo’s Oil, you are familiar with this disease.
From about.com (written by Mary Kugler, R.N.): The 1992 movie “Lorenzo’s Oil” brought a rare disorder called adrenoleukodystrophy (ALD) to the world’s attention. It is a progressive degenerative myelin disorder, meaning that myelin, the “insulation” around nerves, breaks down over time. Without myelin, nerves can’t function normally or at all. Unfortunately, the body can’t grow replacement myelin, so the disorder is progressive — it gets worse over time.
There are several forms that ALD can take. The most devastating type, what Lorenzo Odone had, is the childhood cerebral form, meaning that nerves in the brain are destroyed. About 35 to 40 percent of all cases of ALD are this type, which usually appears between 4 and 8 years of age in boys. These boys will usually become totally disabled in six months to two years and die sometime after.
Unfortunately, there is as yet no complete cure for cerebral ALD. However, there are several methods being tried that seem to slow down the destruction of the disease. One method is the use of “Lorenzo’s Oil,” made from olive and rapeseed oil, and a very low-fat diet. The oil, if started early in boys with ALD but no symptoms, is now known to have some benefit in preventing the childhood cerebral form of adrenoleukodystrophy. Researchers are still trying to understand the complex relationships among fats in the body, and how Lorenzo’s oil could be further modified to be more effective.
A second treatment for cerebral ALD is bone marrow transplant. The idea is to replace cells that have a defective ALD gene with cells that have a normal ALD gene and will break down fats. In early March, Teresa, Joel and Riley (teamgreene) were sent to Duke University Hospital for Riley to begin a healing process with the assistance of a bone marrow transplant. To date, Riley has been isolated from the outside world for more than 50 days.
For as long as Riley is in the hospital, all proceeds from the SewCute Shop will be donated to help teamgreene with medical and living expenses. SewCute features handmade sewn items, including purses, blankets, aprons, camera strap covers, kitchen towels and little man onesies. Thank you in advance for any purchase you make from SewCute Shop – it is going to a SewGood Cause.
Visit www.carepages.com/carepages/teamgreene for more information on Teresa, Joel and Riley
Riley’s Page on The Christian’s family blog: http://bit.ly/9HOyh
Facebook: Joseph Riley Greene ALD Contribution Fund Page: http://bit.ly/KFq3y
For more information on ALD: Stop ALD Foundation: http://stopald.com/
National Institute of Neurological Disorders and Stroke, National Institutes of Health: http://www.ninds.nih.gov/disorders/adrenoleukodystrophy/adrenoleukodystrophy.htm