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“The Not So Average Family” – A Q&A with an NF Mom and author of a new book about NF and family

By February 16, 2023February 16th, 2024Awareness, NF2-SWN, Story of NF

Five years after Sally Wilson and her husband welcomed an unexpected set of twin girls into their family, they were shocked to discover another set of twins—this time, a boy and a girl – were on their way!

Adding to the chaos of parenting two sets of multiples, their son, Patrick, was diagnosed with a brain tumor at six years old. The low-grade malignant tumor was removed a few months later, along with his left temporal lobe, which led to years of behavioral challenges. Some years later, their daughter Elizabeth, from the first set of twins, suffered a brain hemorrhage when she was in her early twenties. After Elizabeth emerged from being in a semi-coma for three weeks she had to relearn how to walk and talk, among other basic skills. Two years after her hemorrhage, Patrick was diagnosed with NF2 after the discovery of bilateral acoustic neuromas.

Life as parents to two sets of twins was demanding enough, but these brain traumas took the Wilson family’s life to the red zone! And Sally was moved to write “The Not So Average Family,” a book about life, family, and perseverance.

Children’s Tumor Foundation: Tell us about Elizabeth’s brain trauma when she was in her 20s. This was not related to neurofibromatosis, correct? 

Sally Wilson: Elizabeth’s brain hemorrhage came out of the blue. It turned out it was caused by an AVM (arteriovenous malformation) – which the doctors say are as random as a freckle. It happens before birth, instead of the veins and arteries in the brain dividing in a symmetrical fashion, they get tangled up. The brain can support it for about 20 years before the pressure causes it to hemorrhage. Some have headaches and seizures before, and the doctors are alerted and can cauterize the AVM. Others, like Elizabeth have no symptoms and a brain hemorrhage results. It is definitely not related to NF. Just unfortunate our family had two brain traumas.

Something that doesn’t get enough attention are super siblings. Elisabeth and Patrick each have a twin sister. What was it like for Amy and Kate growing up, respectively?

SW: Amy and Elizabeth had an ideal closeness and friendship growing up, until Elizabeth’s hemorrhage. With Elizabeth’s semi-coma and long rehab, it turned Amy’s life as upside down and Elizabeth’s.

Kate and Patrick, especially Kate, had a more difficult relationship. Patrick had seizures beginning at 5 and then some brain damage as they had to remove his left temporal lobe at 7 in order to remove his tumor. His behavior was extremely challenging, and Kate seemed to bear the brunt of it. From a young age she was bitter that she didn’t have a twin relationship like Amy and Elizabeth. Patrick ended up taking a lot of our concentration and time. Even though we all did our best to give just as much attention to Kate, it was very difficult. Additionally, his behavior made it difficult for him to connect with friends which seriously affected Kate and her friends.

You’ve written about leaning on humor to add some levity, as well as fundraising and giving back. How did your family cope?

SW: We coped by trying very hard to be “average”. All three girls were very involved with sports and school, and we tried to pretend we were just another family with four kids. But, in the background, Patrick was putting a tremendous strain on all of us.

Fortunately, as Patrick grew, his brain started to settle down and by the time he had two additional tumors and was diagnosed with NF2, he was recognizing his challenges. But Kate had already been so challenged by Patrick, she was just beginning to move on. Patrick’s and Elizabeth’s participation in the half marathon at Virginia Beach with the NF Endurance team was an enormously positive time for our family.

How are Patrick and Elizabeth doing these days?

SW: It’s been over 20 years since Elizabeth’s hemorrhage, and she is now very close to normal. She has an excellent job, is remarried to a fine man and her life is good. The family will notice a few changes – she’s often more “black and white,” her memory is still a bit of an issue (she writes everything down!), etc. But all in all – pretty amazing.

Patrick will be 41 soon and has now taken life by the horns! His hearing is deteriorating, he wears hearing aids, and he has some vertigo at night. But he is now able to recognize when he angers too quickly or is easily impatient. He works hard to be in control and to be responsible. And, he is! He drives for UPS near Aspen in Colorado, owns his own home (with an Airbnb), has chickens (sharing eggs with his renters), takes advantage of all the winter and summer outdoor activities in his area, and trains dogs! He is very involved with his small town of Carbondale, CO and volunteers whenever he can. He now has plenty of friends (after a lifetime of none) and sometimes girlfriends – but says he will never marry. He is an affirmed bachelor, and happy about it!

Why did you write this book? What do you hope it achieves?

SW: I originally wrote this book for my four kids. I did not want them to forget their challenges and difficulties as I’m sure that is what shaped them into the four special adults they are today. However, as I wrote with a writing group, everyone was insistent that I share our story with other families. It is not specifically about NF or brain traumas but it is about how our family was affected, especially the siblings. I hoped other families would relate to our frustrations, our attempt to be an average family, to keep our humor – and our perseverance!

Anything else you want to make sure the NF community knows about your family or your journey?

SW: As I said, this story is not specifically about NF but I’m sure all NF families would relate to our often-discouraging progress with Patrick and the irritation and exasperation of his siblings. But hopefully our story of our continued faith in Patrick and then Elizabeth, and their siblings, would encourage other families to persevere also.

Where can folks purchase the book?

SW: It is now available as in e-book on Amazon. The physical book is available both on Amazon and Barnes & Noble.


How does NF2 impact your life now, as an adult?

Patrick Wilson: My biggest annoyance is my hearing. As a driver for UPS, I need very good ones – in other words – very expensive. I have a few other minor medical issues (vertigo, squamous cell spots removed) and need to be vigilant about medical checkups, MRIs, etc. This of course means always having very good medical insurance. I don’t dwell on it but a little worry about my future health is always in the back of my mind

NF affects everyone differently, and an idea the community rallies around, and finds strength in, is ‘making NF visible’ and making the person living with NF visible. What is something about yourself that people can’t see, but you want them to know?

PW: Since NF, especially NF2, is rare, very few people understand it or even know of it. If I were a cancer survivor, friends, acquaintances, and employers would be more understanding. Understanding of the challenges I’ve worked hard to overcome all my life, understanding if I get a touch more frustrated than others, and understanding that I am sincerely passionate about helping and giving to others that have struggled.

When you’re faced with so many more obstacle than most, when you overcome those obstacles, you realize then that you are stronger than most. But not many would understand my thoughts, so I keep them to myself and just keep on going.