By Sonji Wilkes
I never could have imagined that hearing the words, “Thomas has severe hemophilia,” would equate to being thrust into a world of inspirational people and unexpected acts of kindness. When Thomas was diagnosed and the doctor asked, “Do you have a good insurance plan?” my mind immediately focused on the challenges we would face.
While my family has certainly had our fair share of struggles, it’s nowhere near the trials other families have had. Many bleeding disorders community members deal not only with the difficulty of managing their disorder, but also are faced with financial uncertainty. Employment woes, insurance costs and the general cost of living stresses everyone. As discussed in “Affording to Bleed,” the financial ramifications of living with a bleeding disorder go much further than just paying for medical care: it’s paying the gas to get to clinic appointments, shelling out for parking, and buying meals on the go and toys to keep little ones entertained during the course of appointments. Medical debt doesn’t only happen because of the high cost of medication.
The thing about the bleeding community, though, is that we take care of each other. We do it in the form of support and education like: HFA’s Dads in Action, Blood Brotherhood and Blood Sisterhood programs. We do it individually through the relationships we form with each other. We do it by advocating on Capitol Hill and in state legislatures. We also do it by offering assistance in other ways.
Later this month, the community will rally to support each other. Over three days, a group of community members will participate in Gears for Good, a 156 mile bike ride from West Virginia to Washington, D.C. The ride is compromised of guys who have hemophilia, moms and dads inspired by their little ones, and caring people who just want to lend a hand. The money raised from the bike ride will help fund Helping Hands, HFA’s crucial program that is available to individuals and families in the bleeding disorders community. The program assists people who are going through temporary financial crisis for reasons related to their condition. Anyone living with (or caring for someone) with a bleeding disorder can find themselves in need of help at some point during their lives. The folks participating in the ride understand that at any time it could be them who might need a helping hand.
When I think about the single mom whose little boy is facing back-to-back hospital stays while she balances keeping her job, paying the ever-mounting bills and putting food on the table, I worry. That worry is somewhat relieved because there are guys who face the same tribulations and know what living with hemophilia is like. But while their joints may ache, their hearts soar; they will ride and raise money to help the single mom whom they’ve never met. I can’t make it out to D.C. this year, but my husband and I will be virtual riders and have set a goal of raising $2,000 for Gears for Good.
For more information on assistance programs offered in the bleeding disorders community:
|Organization||Program Description||Program Website & Information|
|Hemophilia Federation of AmericaHelping Hands Program||HFA’s Helping Hands program is designed to establish a rapid, non-invasive source of relief for emergency situations or urgent needs to persons who are affected by hemophilia or von Willebrand disease. Each year, Helping Hands aids hundreds of families with emergency/urgent funding to assist in crisis situations such as housing, transportation, and utility bills.||http://www.hemophiliafed.org/programs/helping-hands/|
|Patient Services Inc||Since 1989, Patient Services has helped people who live with certain chronic illnesses or conditions locate suitable health insurance coverage and access ways to satisfy expensive co-payments. By developing innovative financial assistance programs, we have helped tens of thousands of patients achieve positive health outcomes. Below is a list of our current financial assistance programs:||https://www.patientservicesinc.org/how-we-help/financial-assistance-programs.aspx|
Sonji lives with her husband, Nathan, and three children Nora (11), Thomas, (10), & Natalie (7) in Colorado.
*Note: “Infusing Love: A Mom’s View,” is a blog collection of personal opinions and a representation of individuals experiences. While extensive efforts are made to ensure accuracy of the content, the blog entries do not represent HFA or its Board of Directors. The blog is also not intended to be construed as medical advice or the official opinion/position of HFA, its staff, or its Board of Directors. Readers are strongly encouraged to discuss their own medical treatment with their healthcare providers.