Support for Cadence and Asher
A few months ago, my nephew, Cadence, was thought to have hearing problems. The results of testing revealed a more devastating diagnosis called MPS II (Hunter Syndrome), a rare genetic disorder that results in a missing or faulty enzyme needed to break down complex molecules in the body. The buildup of molecules causes various symptoms, many of which are life-threatening and quality of life interfering (e.g. respiratory difficulties, cardiovascular problems, progressive hearing loss, etc). More information about this disorder can be found at http://mpssociety.org/mps/mps-ii/ .
After Cadence was diagnosed, it was recommended that his younger brother, Asher, also be tested though he had no obvious signs of the disorder. He was diagnosed with MPS II also. There is no cure.
There is a new medical treatment that is believed to slow the progression of the disorder and greatly improve quality of life. It is an enzyme replacement treatment called Elaprase. The treatment averages $300,000 to $500,000 per year, per child. More information can be found at www.elaprase.com. The boys have had ports surgically implanted and will begin receiving treatment within the next few weeks.
This news has been devastating for our family. The diagnosis means having to experience the loss of my nephews living the kind of happy, healthy life most people are afforded. We want to make sure they have the kind of life that is worth living for them - to make their lives as happy as possible.
My brother and sister-in-law, Mike and Lori Adams, are driving over 200 miles per weekly visit to the hospital. Funding will help with the cost of transportation, including a reliable car (theirs is on its last leg!), cost of medical expenses such as Elaprase treatment, occupational therapy, speech therapy, and physical therapy. With two boys who have MPS II, it is impossible to have 2 incomes and to ensure medical needs are met.
Every dollar will help. Please help me in supporting my brother and his family. We will be eternally grateful for any help you can offer.