In late October, I had the privilege of attending a retreat with a wonderful group of women from the First Presbyterian Church of Ambler. Our theme for the weekend was "Journey Forward in Faith," and over the weekend we learned about the journeys of many women in the Bible. We also learned about each other's faith journeys, and prayed for God to use us in the lives of others as we continue on our journeys. Before leaving on Sunday, Anne stood and stirred all of our spirits as she spoke to us about Phyllis' two little boys, Nathan and Bennett, who have Mandibulolacral Dysplasia Type B, a type of Progeria.
Progeria is a premature aging disorder that results in many of the typical symptoms of aging and ultimately results in a shortened lifespan. Although they are usually born looking healthy, most children with Progeria begin to display many characteristics of Progeria within the first year of life. Nathan and Bennett are extremely small for their age and suffer from a significant lack of subcutaneous fat, wormian bones in their skull, clubbed fingers, acroosteolysis (reabsorption of the finger tips), stiff joints, muscle weakness, hair loss, developmental delays and delayed teeth eruption. As children get older, they suffer from osteoporosis, generalized atherosclerosis, cardiovascular (heart) disease and stroke. For children with classic Progeria, the average lifespan is 13 years. Because Mandibuloacral Dysplasia Type B is so rare, the life expectancy of Nathan and Bennett is unknown. World-wide, there are approximately 250 children who have Progeria, and as Anne reminded and prodded us on that Sunday morning, two of them are part of our church family!
As we returned home eager to allow God to use us, many people contributed financially to the Progeria Research Foundation (PRF). In addition emails began circulating about other ways that we might be able to support Phyllis, Mark, Libby, Nathan and Bennett. It was out of this eagerness to serve and be used by God that this idea of HIKE4HOPE was born.
As I thought and prayed over what was said at the retreat, I felt a calling to not only raise funds for PRF but also to DO something that would increase awareness about Progeria and honor those children and families who are affected by it. We so often take for granted that we can do things such as walk, run, and participate in competitive or leisurely athletic activities for extended periods of time. Children with Progeria are unable to do such activities for long periods of time. In response, I have committed to hike one mile on the Appalachian Trail for every child who has Progeria. These children may not be able to walk or hike one mile but I can, and I can carry them with me in my thoughts and prayers as I go.
Over the next several months I will be fundraising for PRF with a goal of $25,000, and will be engaging in activities to help raise awareness about Progeria. Then, from mid June through mid to late July, I will complete a 250 mile Hiking/backpacking trek on the Appalachian Trail.
I chose to title the event HIKE4HOPE, based upon Jeremiah 29:11, which says, "'For I know the plans I have for you,' declares the Lord. 'Plans to prosper you, and not to harm you; plans to give you Hope and a future.'" A cure is out there somewhere... it just hasn't been found yet. Join me on this adventure and together we'll help Nathan and Bennett to have a future filled with hope!
I want to invite you to join me in this HIKE4HOPE, and there are many ways in which you can do that.
- Visit my fundraising site and donate online to PRF. Click here: HIKE4HOPE Fundraising Site
- Send a check payable to Progeria Research Foundation, to: HIKE4HOPE, PO Box 641, Flourtown, PA 19031
- Ask your employer about matching contributions.
- Join me for a portion of the hike
- Join me for the entire hike
- Help to raise awareness about Progeria in your local community and workplace
- Pray for HIKE4HOPE, for Nathan, Bennett & Family, and for researchers to find a cure for Progeria
- Check this blog periodically to see what's happening
- Visit Nathan & Bennett's website: Fighting for their Future
- There may be other ways to get involved. Please share your ideas and stay tuned for more information.