Shortly after Thomas was born, the National Hemophilia Foundation (NHF) Annual Meeting was being held in Salt Lake City.Â My husband, Nathan, and I were eager to absorb any and all information about hemophilia, so we made the decision to pack up our 2-year-old daughter, Nora, and 3 months old Thomas, and take a road trip from our home near Denver.
Since it’s about an eight-hour drive, we decided to split the trip over two days.Â We thought that having young children in a car for longer than that would probably not end well.Â On the second day of the trip, about ninety minutes outside of Salt Lake City in Evanston, Wyoming, we pulled over for a pit stop.Â We got back onto the highway shortly after a light snowfall began.Â Just as Nathan reached highway speeds, we went into a slight turn.Â The tires didn’t stick to the road though, and we lost traction on black ice and hit a concrete barrier headfirst.
Luckily after being checked out at the nearest hospital, we all were mostly unharmed.Â Our beloved Nissan Xterra, though, was not.Â The totaled car was towed to a junkyard as we wondered what to do – should we forge ahead to Salt Lake City, or should we try to rent a car and drive home? Â Nathan asked the emergency room doctors in Evanston to transfer us to Salt Lake City’s Primary Children’s Hospital – he explained that we were new to hemophilia and didn’t know that much. After the doctor pulled the product insert out of the factor box to learn how to mix it, Nathan respectfully told the doctor that he didn’t seem to know that much either.Â The doctor agreed and put us in the back of an ambulance to Salt Lake City.Â Once there, more knowledgeable hospital staff checked us out again and kept Thomas and I overnight for observation, but by the next morning we were released. Somehow we had escaped a scary wreck.
We still had a problem though – we were 500 miles from home and had no transportation to get back. We ran into several board members from our chapter and were recounting our arrival by ambulance and our then chapter president said, “You know, we have a financial assistance program.Â Maybe I can get the committee on the phone and we can buy plane tickets to get you guys back home.”
To say we were at our most vulnerable when that offer came is quite the understatement.Â We had just been hit with an expensive bill from Thomas’s stay in the neonatal intensive care unit after his birth and simply didn’t have the cash flow to buy last-minute plane tickets home.Â I don’t know what we would have done without the financial assistance program our chapter offered – we were in a bind and that program helped us immensely.
HFA’s Helping Hands is a similar program.Â Living with a bleeding disorder is astronomically expensive and for many families, there are times when a financial hardship hits and you just need some one-time help.Â It’s not easy to reach out for help – it’s downright embarrassing sometimes.Â But I’d like to think that as a bleeding disorders community we take care of one another and thankfully, there are programs in place to help the bleeding disorders community in times of need.
Recently, while the kids and I were talking about the wreck, I reminded them of how our community helped us.Â They asked if we had to pay the money back for the plane tickets and I explained that we didn’t. Â I added that HFA has a similar program to help people in temporary financial need, and that this time of year is the big fundraiser to raise money for this vital program.Â Suddenly, I had an idea. What if each of us in the family donated a $1 for each finger of our hands?Â That’s $50 that we could give and it could really help someone.Â We could make our fingers do the counting and truly be a part ofÂ “Helping Hands.”
It was a pretty easy way to get my children involved in giving back and certainly raised their awareness that it takes all of us together to help make a difference.Â Many hands make light work – and if we all chip in we can be helping hands for those in need in our community.
Helping Hands is a critical, one-of-a-kind program 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 bleeding disorder.
An applicant is eligible to receive assistance once per year. The program is truly a source of temporary help. Applicants are encouraged to consult multiple resources and programs to resolve their financial needs.
The program is funded via donations made to the Gears for Good bike ride, program sponsors, annual membership dues and contributions made in memory and in honor of members of our community.Â
Read stories from families who have directly been helped by Helping Hands:
- A family’s struggle with VWD and other special needs
- A long hospital stay
- A bleed, and no money to bring the child in for care
Sonji lives with her husband, Nathan, and three children Nora (12), Thomas, (11), & Natalie (8) 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.