HELP SPREAD THE WORD!
Can't donate? Have you already donated and want to do more?
With knowledge comes power, and hopefully, a cure. Visiting this website is much appreciated! Please consider reading more about Junctional Epidermolysis Bullosa, and passing along the information to a friend or family member.
The power of social media and 'sharing' information about this horrible disease is also helpful.
Thank you all so much for your support!
WANT TO GET THE KIDS INVOLVED?
We are always so appreciative of notes, letters, drawings of encouragement. This is especially important when thinking about the social impact of EB. Ryan's sister, Emmy, is also isolated at times, and dragged to appointments, left out of after-school and enrichment activities, sometimes going months at a time without having a parent at home (when Ryan is in the hospital).
If your or your child wishes to write a note to Ryan
and/or Emmy, please email me:
We'd LOVE to hear from you!
HEALTHCARE COSTS ARE SOARING
Ryan's wound dressings cost over $400,000 per year. Specialized dressings developed by a company in Europe are required to provide the right amount of adhesive, breathability, and healing properties. We have been fortunate enough to offset this cost with insurance coverage, however, with the changing state of healthcare, fear that we may one day be responsible for these exorbitant costs.
But it doesn't just end there. Ophthalmic ointment alone is approximately $100/month, alongside payment for creams, ointments, copays and over-the-counter products that the insurance does not cover.
And the burden of caring for a person with special needs extends well beyond that of 'product.' Consider inclusion and making one's home wheelchair accessible. This is paramount for mental health and wellness, which also impacts level of independence and physical health. While our new home is wheelchair friendly, it is not wheelchair accessible. Ryan is unable to access the basement (the coolest and best place for him to be in the house) or the upstairs. He is unable to enter the home through the front door - uneven stones make it too 'bumpy' for him to navigate, and the presence of stairs makes it impossible for him to enter and exit. The backyard is more of the same uneven stone and he cannot utilize the back patio to sit with us at all because of lack of access. The kitchen is barely accessible, and one of his greatest loves is cooking.
Trees providing backyard shade were recently cut down, requiring us to replace with costly quick growing and already established trees to create the shade Ryan requires to be outdoors.
The process is never-ending, too. One project lead to the next.
We have been fortunate to obtain a wheelchair vehicle for transport, but have a hefty payment, and the vehicle needs constant upkeep and maintenance.
Nursing care is hard to come by, and when not covered by insurance, requires us to pay out of pocket. This has led me to have to truncate my hours at work (thank goodness for an understanding employer), that puts more financial and physical strain on the family.
Please consider support through our GoFundMe Page. Any amount is truly appreciated.