A Special Letter from an NF Mom

From Jenn, mom of Audrey, a 5-year-old with NF1

I think your daughter might have a condition called neurofibromatosis.

Don’t Google it. Look at me….. DON’T Google it.

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Do you remember the first time you heard the word “neurofibromatosis”? Did you ignore your doctor’s advice and Google it, like I did? Did the information and images you discovered fill you with dread?

When my third child, Audrey, was three months old, we visited a dermatologist at the advice of her pediatrician to have a birthmark checked out. The birthmark that was the purpose of the visit turned out to be inconsequential. But the dermatologist, with her many years of expertise, noticed additional birthmarks that I hadn’t seen…café-au-lait spots. More than six of them. And after she had searched my baby daughter from head to toe and counted more than six café-au-lait spots, she uttered that word to me for the first time….neurofibromatosis…and my life changed forever.

The next several months were a bit of a whirlwind as my husband and I went ahead and Googled NF, which we, of course, later regretted, and followed up with our pediatrician on possible next steps. We found ourselves at the NF Clinic at Lurie Children’s Hospital in Chicago. Although Audrey’s diagnosis would not be confirmed until her second visit there one year later, by which time she had developed her first dermal neurofibromas, the doctor told us on that day that he felt certain that our daughter did indeed have NF1. As we left, he handed us a pamphlet from NF Midwest, and told us that they would be hosting a symposium very soon.

We went home, and I can only describe what we experienced during the weeks and months that followed as grief. I did not recognize it as grief at the time. We still had our child. Not only that, but she was healthy—we saw few signs of her disorder. What right did we have to grieve? Looking back, I know now that grief is exactly what we were going through. We were mourning the loss of the healthy third child and the family that we had thought we would have; the loss of the carefree days when every time one of our children complained of an ache we could chalk it up to “growing pains” and not worry that it was a rapidly growing tumor.

I don’t like feeling helpless, which is exactly what I was in this situation. I did the first thing I could think to do. I called NF Midwest and registered for their Symposium, to educate myself on what had suddenly become a huge part of my life.  Director Diana Haberkamp called me back the same day. She asked me about Audrey. She told me about her husband and children. She answered my questions. She sent me a packet of information. My husband and I attended the symposium and learned a great deal about NF—some of which was hard to hear, all of which helped us better understand what our daughter may face in her life.  Several months later we formed a team for Great Steps 4 NF—Audrey’s Army. We were the top fundraising team that year. Audrey is 5 years old and we have participated in 5 Great Steps walks. We have been among the top three fundraising teams every year, and have raised over $30,000.

We became active with NF Midwest at first because there was not much else we could do to help our daughter. Only as time went on did we realize how much NF Midwest does for us, and for all of the people in the NF community.

• They support research toward better treatments for the numerous symptoms associated with this disorder and advocate for more research funds through the federal government.
• They make NF clinics and doctors who are knowledgeable about NF more easily accessible to all of us.
• They send out newsletters and educational materials, host an annual symposium, and maintain an excellent website so that we can all stay up-to-date on the latest NF research and findings.
• They assist parents in getting their children IEPs, in obtaining special services, in providing information to teachers, in meeting other kids living with NF.
• They are only a phone call away whenever one of us has a question or needs advice.

NF Midwest supports us in countless ways, and they need our support as well. Providing these services is not free. It is unfortunate that neurofibromatosis, the most common genetic disorder caused by a single gene, is not widely known and therefore does not attract the same attention—or funds—that some other health problems do.

As members of the NF community, and as the people who benefit most from these services, it is up to us to support NF Midwest, just as they have supported us. Many of us are members of different organizations and are willing to pay for those memberships, either because of the privileges associated with membership or in order to show our support of the organization—churches, clubs, museums, subscriptions, athletic associations, etc. We are part of the NF community just as we are a part of these other communities. In order to maintain the level of service, they’ve been able to provide NF Midwest needs our support just as much!

NF Midwest serves over 1,500 families. If each of us contributed at least $20 per year (less than $2 per month!!) it would be immensely helpful in allowing NF Midwest to continue to help improve the quality of life for people with NF. Even $10, or whatever amount you could give, would make a difference.

If you are unable to contribute yourself, please consider fundraising on behalf of NF Midwest. You do not need to actually walk or even be present at Great Steps events in order to raise funds for them. It is very easy to create a fundraising page through NF Midwest, and the NF Midwest staff will be happy to assist you in doing so.

As I mentioned earlier, Audrey’s Army has raised over $30,000 in five years of participation in Great Steps 4 NF. Do you know how we did that? We simply asked people. We created a fundraising page through NF Midwest, and then we just shared it—put it out in the world via email, via social media, via printed flyer. We didn’t need to be pushy, badger people, or go door-to-door. We simply explained why this is important to us and invited people to help.

As someone closely impacted by NF, I don’t need to explain to you why this is important to me. It is important to you too. Maybe sharing that with someone else will inspire them to support this organization that does so much for the NF community. Perhaps you are not comfortable sharing your story. In that case, feel free to share my family’s story, or just NF Midwest’s website, where other information is highlighted…or just send in a few dollars. It’s a small price to pay for the support and genuine concern NF Midwest provides to all of us who are affected by neurofibromatosis.

You can donate using the button below or at www.nfmidwest.com/donate. We’re all in this together, so I hope you will make a contribution today.

Sincerely,

Jennifer

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