A personal note to you…
First, I thank you for the opportunity to educate you about Batten Disease–a very rare inherited, degenerative, neurological disease which affects persons of any age, but primarily infants, toddlers and school age children. It begins unexpectedly and leads to a progressive loss of brain function eventually leading to an early death. At this time, there is no treatment or cure available and it is always fatal.
In the United States, one child is diagnosed with the disease every week! Over time, affected children suffer mental impairment, worsening seizures, and progressive loss of sight and motor skills. Eventually, children with Batten Disease become blind, bedridden, and unable to communicate. Presently, there is no treatment for Batten Disease and the disease is always fatal. Because of its rarity, Batten Disease does not attract large government grants or charitable funding. For more information go to the BDSRA website: www.bdsra.org
Our only grandson, Eric (14) was diagnosed with juvenile Batten Disease in the fall of 2004. In the fall of 2007 our granddaughter, McKenna (8), was also diagnosed with juvenile Batten Disease. Eric is now almost completely blind, but plays baseball and hockey on special leagues, and enjoys swimming and building leggos. McKenna also participates in the special hockey league. She enjoys watching “Underdog” cartoons and playing Barbie dolls with her sister, Sophie (4). Both Eric and McKenna are entertained by Zorro (the family dog) and Kamarhi (the family cat). The newest addition to the family is Tori (8 mos.) Sophie and Tori have been genetically tested and they do not have Batten Disease. Let us hope their parents, Chris and Danielle, will be able to handle, mentally and physically, the many difficult challenges they will face in the coming years.
We need your help. Please consider participating in my third annual Hope for Batten Cure 5K Run, 2 Mile Walk, 1K Fun on Saturday, May 15, 2010 at Bachman Lake in Dallas. If you cannot attend the event but wish to contribute, you may write a check to BDRSA and send it to Nancy Lowden, 12116 Cross Creek Dr., Dallas, TX 75243. All monies raised will be designated for research into finding a cure/treatment for this horrible disease. BDRSA is a non-profit organization qualified under 501 (c) (3) of the Tax Code.
It is my hope and prayer that you will participate or donate to my annual fundraising event.
Yours truly,
Nancy and Scott Lowden
Eric and McKenna’s Grandparents
SPONSORED BY
BATTEN DISEASE SUPPORT AND RESEARCH ASSOCIATION (BDSRA)
