- Conversation started November 7, 2011
As NF advocates and Children's Tumor Foundation volunteers, we are often the first NF affected person with which a new family has contact. We have this awesome responsibility of giving each one a memorable first impression. Whether we foster that friendship ourselves or make a connection to another individual with similar circumstances, we are in the business of building relationships. Sometimes these relationships are brief and sometimes they are lasting, like the one I have with Allison.
As a 14 year old, Allison Sovie became curious about meeting
other people with NF. Being from a small town near Binghamton, NY, she didn’t
have much knowledge about her diagnosis and had never met another person with
the disorder. On November 7, 2011, she posted on Facebook looking for
information. I requested her as a friend and, because she is a wise and responsible
girl and I was a stranger at that point, she asked me a few questions before
accepting my request. We had a brief,
online conversation, and then I didn’t hear from her again for almost a year.
On October 30, 2012, she emailed me through Facebook for
advice about her symptoms, her friendships, and how to incorporate NF into her
everyday life. She felt ashamed and isolated with her diagnosis and wanted to
make changes. It took a lot of courage for her to make contact and begin the
process.
We quickly struck up a friendship and graduated from
Facebook messaging to texting, and eventually she gathered the courage to FaceTime
with me, my son Jesse (who has NF), and my daughter Alexa. That was the first
time that she ever spoke to another person with neurofibromatosis.
After weeks of complaining about persistent headaches and
clumsiness, I told her about the NF Clinic in Rochester and her mom made an
appointment. Luckily, they moved quickly because Dr. Mulbury didn’t agree with Allison's
previous neurologist’s opinion that the tumor on her cerebellum was stable. She
immediately ordered an MRI and set up a consultation with the neurosurgeon at
the Clinic. It was decided that Allison needed to have the tumor removed.
The first time we met face-to-face was in the waiting room of the URMC NF Clinic. My initial thought was about how tiny and fragile she seemed. Although we had been communicating for months by now, she was very quiet and shy. Granted, she had a lot of information to process that day: brain surgery, tumor growth, a new NF doctor, and meeting me for the first time, yet even with all of that on her mind, all she wanted from me was a hug. I was happy to oblige.
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| Allison and I at the NF Forum Nashville, TN Walk 2013 |
Before the surgery, Allison and her mom, Tracy, were lucky
enough to attend CTF's 2013 NF Forum in Nashville through a grant from the
NF R.A.C.E.R.S., an organization formulated to grant assistance to NF families living in New York who are in need. At the Forum, both Allison and Tracy were able to connect with many other
families and individuals with NF and make new friends.
Allison’s surgery and recovery took place over this past
summer. She is doing well and will continue to be monitored with regular MRIs.
Just a year ago, I didn’t even know Alli-Sunny, as I refer to her. Now, because
she was brave and curious and overcame her fears of learning more about NF, she
and I are inseparable. I care for Allison as if she were family. She is kind
and sweet and smart and funny. I am so happy that Allison reached out to me and
to others in the NF community. Now she can walk with her head held high and
feel no shame about her diagnosis. She is a true NF Hero.
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