We have friends that have a child affected with what is called Angelman syndrome.
What is Angelman syndrome?
Angelman syndrome (AS) is a rare neuro-genetic disorder that occurs in one in 15,000 live births. Angelman syndrome is often misdiagnosed as cerebral palsy or autism due to lack of awareness. Characteristics of the disorder include developmental delay, lack of speech, seizures, and walking and balance disorders. Individuals with Angelman syndrome will require life-long care.
~ Taken from www.angelman.org
It is a disease that is unrelenting and hard to navigate for any family. What makes it worse is that they need constant monitoring and this usually means that the families cannot afford a caregiver and rarely are they supported from outside the immediate family unit.
We have watched our friends truly struggle over the years without any real support network or safety net in a state and community that had extremely limited funding before they started this health care stripping down that is happening across the nation. Poor states have taken a brutal beating already and it’s only just begun.
Politics aside – our motivation is that we wanted to help more than we are currently able. We realized though that we could easily create a line of jewelry that would allow us to sponsor an adopted family (and perhaps several if this works out!) and donate a portion of the proceeds from that line of jewelry to our sponsored family. This would enable them to make a medical co-payment, afford the gas to go to several doctor’s appointments, maybe even help pay for therapy sessions and towards items like nonverbal communication devices and being able to repair them when they get broken and buy protection accessories to try to protect them if they get a bit of tough love from their Angel.
It is our hope that we can ease a bit of the stress and worry from our sponsored Angel family in some fashion and enable them to afford to get an Angel a bit more help and support than they might otherwise be able to get, and to show them that they are not alone in this journey, that we love them and their precious Angel.
To learn more about Angelman syndrome, please check out the below links:
• Angelman Syndrome Foundation
• The Foundation for Angelman Syndrome Therapeutics (FAST)
• The Angelman Project