Twin sisters Elizabeth and Alanna Halloran were diagnosed with NF2 in December 2017, when they were 12-years-old. Elizabeth had a “cyst” removed from her scalp. The lab results came back as a schwannoma. A few weeks later, a genetic test confirmed an NF2 diagnosis for Alanna and Elizabeth.
Since their diagnosis, the twins have had significant surgeries, including two brain surgeries (Alanna), and a combined Laminectomy, excise tumor lumbar surgery (Lizzie), and several minor surgeries to remove tumors in less “critical” areas.
Both participate in the National Institute of Health (NIH) NF2 Study in Bethesda, Maryland. They are fortunate to be under the care of Dr. Christopher Moertel and his talented team of specialty doctors and nurses at the University of Minnesota Masonic Children’s Hospital. Both participated in “The Integrated Brain Health Clinical and Research Program at Massachusetts General Hospital” 8-week program with other children diagnosed with NF1 and NF2.
Diagnosis Impact
Lizzie and Alanna have worked through many emotions since their diagnosis. “My first reaction to my diagnosis was honestly, just anger and confusion,” explained Lizzie. “I had no idea what was going to happen to my sister or me. I couldn’t process NF2 being a part of me. I remember thinking how my diagnosis is something that would happen to someone else, not to my sister or me.”
Alanna was overwhelmed by all the unknowns in their future. She explained, “I was worried about Lizzie, about my parents, about possible medical complications. When I was in school the first week and remembered the diagnosis, it felt like a punch in the gut every time. But having open and long discussions with our care team put our family and me at ease because we felt respected and cared for,” Alanna continued.
Our NF2 Care Plan
We believe the impact of your care plan is significant because it touches every aspect of your present and future life. So we make our care plan work for us. “We learned early on to ask for scheduling accommodations in our treatment plan,” explained Alanna. The twins get semi-monthly Avastin treatments. The Halloran family worked with their care
team to schedule Avastin treatments late in the afternoon to accommodate their school schedule. They have an open order for lab work the day before to get the infusion later in the day. The lab work is done after school every other Monday afternoon, so no classes are missed.
Another necessary accommodation is to reach out to your school. After their care team accommodated a late appointment, their mom went to the school nurse and explained the situation. As a result, a study hall was scheduled as our last period for all four high school years. This way, we would never miss a lecture or a test for any doctor appointments.
The twins also have three-month Brain MRIs to track vestibular schwannomas and tumors along with intensive audiology exams. “I won’t lie, these can be pretty intimidating at first, ” said Lizzie. “I would worry about them a week in advance, and I am sure the stress didn’t help my exam results.“ It finally took me breaking down in the audiology booth from the stress of the exam (literally a puddle of tears) that I realized this wasn’t working for me, Lizzie explained.
“I needed to voice my concerns to my care team and find some changes to make my hearing tests a less stressful experience. Talking through expectations with our audiologist significantly reduced my anxiety related to these tests.” Lizzie explained.
Every six months, a full-body MRI scans to track other schwannomas and tumors.
Do you share your diagnosis with your friends?
Our genetic disorder is very personal to us. Although we are always willing to have open conversations about our experiences with others, we often only tell close friends about our diagnosis to not make a big deal out of it or change their perspective of us.
Advice to Kids Diagnosed.
Alanna: Be your best advocate. It is still possible to live a normal life and thrive; not just despite your diagnosis, but because of it. I recommend finding opportunities wherever you can to grow and refocus your life on something besides your diagnosis. One way that Lizzie and I try this is by planning our hours spent at our semi-weekly infusions to be spent “growing as a family”; doing fun activities like our family book club and teaching ourselves another language. Turning
our long appointments into a fun bonding experience helped us to shift our life’s focus from the unknowns of our diagnosis to something that I actually look forward to!
Lizzie: I have learned something very valuable that applies to my diagnosis and other aspects of my life. There is so much you can’t control in your life. Obviously, no one would choose to get diagnosed with a genetic disorder. However, what you can control is what you make of your situations. I have learned that my diagnosis DOES NOT define who I am and that I get to choose what NF2 makes of me. I get to choose who I become – stronger, resilient, and a better person.
For both, Alanna and Lizzie their faith is an important part of their journey. Their diagnosis and the resulting fear and uncertainty helped them to grow in their faith and believe that they can find the good in all the combined experiences.
Personal Goals After School
Lizzie: After high school, I want to study abroad in Japan and use the language. I love speaking Japanese and fell in love with the culture the first time I visited Japan. I am also interested in law school and am considering the path of becoming a human rights lawyer in the future.
Alanna: Since our diagnosis, we have been lucky to have met amazing doctors, surgeons, and nurses, who have inspired my choice of career that I would like to pursue after school. My goal is to work in the field of genetic editing and to help find cures for genetic disorders like NF2! I have also always been interested in outer space and working for NASA, and I would be interested in studying space medicine someday.