Jaxon Gauthier is a six year old boy who lives with his family in British Columbia.

He lives with neurofibromatosis type one (NF1) but despite his challenges due to NF1, Jaxon enjoys school and playing with his friends like every other six year old. “He loves playing Lego, colouring, and playing pretend games using his imagination to the fullest,” shares Jaxon’s father, Mike. Jaxon was diagnosed with NF1 when he was just two and a half years old. “We noticed a difference in his walking ability, later to find out he had a leg discrepancy,”

Jaxon receives all his care at BC Children’s Hospital. At the time of his diagnosis, Jaxon also had many café-aulait spots. At the age of five, a large plexiform tumor in Jaxon’s back was discovered. The tumour runs down through Jaxon’s pelvic bone, through the front of his legs, and the back of his thigh, his dad explains. The tumour was causing Jaxon to have severe pain in his leg. The doctors started Jaxon on chemotherapy for the plexiform tumour.

Jaxon also has to take several other medications to prevent the negative side effects of the chemotherapy. He will be having an MRI in February to rule out cancer; which will be determined by the growth rate of the tumour since it was discovered. “This is going to be a very scary time for us, but we are hoping for the best and always looking forward to the future, new treatments, and the ability to hopefully end NF,” Mike shares. “The doctors also noticed a small plexiform tumour on Jaxon’s hypothalamus (a portion of the brain), and a small abnormality in Jaxon’s neck,” shares Mike. Jaxon also has minor scoliosis (curvature of the spine), which is starting to become more pronounced as he grows.

IT HAS BEEN HARD FOR OUR FAMILY TO COME TO GRIPS WITH JAXON’S DIAGNOSIS

Jaxon inherited NF1 from his mother, and several other family members also live with the disorder. “We just want Jaxon to be like the other kids and be able to ride a bike, play soccer, or even just go out for a nice walk without pain,” Mike explains. Jaxon has two brothers, one who also has café-au-lait marks and has also been diagnosed with NF1. “At this time, no other problems have been discovered for Jaxon’s younger brother Emerson,” says Mike.

When asked what advice Mike would offer to parents of children newly diagnosed with NF1, Mike offer this: “Fight for your child. You are the only one who can get things done, believing what you know. You know your child better than anyone. Do not take no for an answer.”

Mike explains that his family has fought very hard to fight for his son so that he can have the best medical care and quality of life possible.

“The BCNF has helped us by providing information which is available online for us and other families with the same disorder.” Mike shares that he and his family frequently use the BCNF website to keep up-to-date on information and research regarding NF.

Mike shares that although it breaks his heart to witness what people with NF deal with, he will help in any way he can. “I will do whatever I can to make the pain, discomfort, and hurt stop for my family and others living with NF.”

UPDATE BY JAXON’S DAD, MIKE GAUTHIER
In October we were given a chance to apply for Jaxon’s Make A Wish Foundation as he was undergoing chemo and was under extreme observation for the NF tumours that run up from his back and leg and the one in his head. Jaxon was on heavy medication and it was great to have something to look forward to.

At this time we contacted the Make A Wish Foundation. Our experience here was incredible! From our first meetings they made Jaxon feel extra special bringing him presents and then making his wish to go to Disney World come true. They gave us enough memories to last a lifetime!

“When the girls were around twenty-three years old, the fibromas started to appear overnight by the hundreds. And naturally, people stare. Not everyone knows what the condition is. Young children are the best, cause they’ll just joke about the fibromas, or ask outright.”

Ingrid Nagy’s twin daughters, Anina and Alexa Nagy, are very lucky – they are two of few people who look forward to going to work every day. At the Mediated Learning Academy, where the girls both went to school, Anina and Alexa now work with younger children,
helping to teach math and arts & crafts. The school’s students naturally gravitate to them, thanks to the twins’ playful and kind demeanors. Outside of work, Anina and Alexa love to hike with their parents, socialize, travel, and go for bike rides. At age 27, they live happy lives, and with the help and support of their parents, guide others to embrace the same positivity.

But 25 years ago, Ingrid wasn’t sure how to take the news when her two-year-old twins were diagnosed with neurofibromatosis. She had never heard of the genetic disorder before. When the girls were first diagnosed, Ingrid cried for days. But in some ways it was also a relief – the family had been concerned about the girls’ delayed speech development, and with a diagnosis they could begin to properly address any learning and health difficulties.

“It was a mixed bag,” Ingrid admits. “In some ways, I was happy I got those carefree years before the diagnosis. But learning what the girls had helped me to finally focus on making things better for them.”

In many ways, Ingrid felt isolated at first – after all, 25 years ago, NF was talked about much less than it is today. Even many doctors and health specialists, Ingrid found, weren’t always familiar with the disorder. Luckily, with the help of BCNF, Ingrid was able to find resources and, most importantly, friends.

“Meeting other people with NF was, at first, devastating. I cried for days thinking about the ways in which my girls would be affected [by the disorder] down the road. It was very shocking. But then, I started to get used to it. You wrap your head around it. And you focus on the every day and hope for the best.”

“I met amazing people – people who were in the same boat as us. I met my friend Ivan very quickly through BCNF; he was a huge support. Seeing someone with NF who was always so upbeat and full of life was a great experience for the girls. It helps you realize that you can be positive with these challenges, too.”

Of course, raising her twins, Ingrid hit road bumps along the way – as any parent does. Her and her husband’s consistent positivity and strength has kept the family happy and striving, even if in recent years, the increasing numbers of fibromas occurring on the girls’ skin has provided additional hurdles.

Rather than teach her daughters to shy away from situations where they may be asked about their condition, Ingrid takes people’s curiosity as an opportunity to spread the word about NF. “People need to know what it is. It’s helpful to talk to people about it and explain – because next time they see someone with the condition, they can recognize the disorder and understand.”

At a conference once, Ingrid remembers being shown a brass statue meant to represent life with NF. “It was a person wrapped in cloth, in hiding. It broke my heart. That type of living kills your spirit. I want my girls to be brave and live fully – not hide under some cloth. My biggest fear is that they will feel they have to hide.”

“We’ve found a lot of people in this community that are going through this alone. That’s where BCNF has been so amazing – the girls have loved connecting with other young people at the social, and at the Scotia Bank run. They’re looking forward to more events like those in the future.”

Ingrid recalls taking her daughters to Switzerland, where they went shopping and found beautiful bikinis. “I realized I couldn’t over-think these small things, like whether or not to let them wear the bikinis out to the beach. If they want to wear them, then of course I should let them – even if it will show off their condition.”

Through this mentality, she has taught her girls traits and virtues that any mother should hope to impart to their children: self-esteem, openness, and the pursuit of joy.

“The girls love to socialize. We travel. We’ve been to Europe three times. And they love working with children.”

While Ingrid has worked to ensure Anina and Alexa live fulfilling lives, she has experienced frustration at the lack of local treatments available for the disorder. In particular, she’s had great difficulty finding plastic surgeons in BC who will treat patients with NF.

“Research is good, but we also need to find people who are willing to help treat and remove the fibromas. There’s a piece of equipment we need, that I haven’t been able to find in BC. It would make such a big difference to so many people,” she explains.

In a society that places such high value on physical appearance, patients’ quality of life can be vastly improved once cosmetic treatments are made available for the disorder. It is therefore understandable that a mother would search high and low for a centre that will address these physical concerns for her two daughters. And perhaps it is because of the existing stigma around physical ‘defects’ that the girls have found such solace in a local anime community.

“Through a friend, Alexa and Anina started going to these anime gatherings. We’d make elaborate costumes for them to wear. They’d love it. Kids would rush up to them and beg for their photos, and they would come home and say ‘Mom, it was so great! Everyone wanted to get their pictures taken with us!’

When asked for words of advice for parents currently raising children with NF, Ingrid’s amazing energy shines through yet again. “You have to stay social. We have a lot of learn from each other [in this community]. We socialize a lot, we hike, and we bike. We live busy lives. And in many ways I’m very lucky, because my girls have each other throughout all this.

At the end of the day, its Ingrid’s gratitude and strength that has taught the girls to embrace life in the face of difficult challenges. “We’ve been blessed with amazing friends and family. And we have to be grateful – we have to look at all the wonderful things we do have, and the quality of life we have here. And we take it day by day.”

In June, 2008, Jeremy De Silveira was awarded an Educational Scholarship from the BCNF, which he went on to use at the British Columbia Institute of Technology (BCIT) after graduating from high school. Jeremy finished a program in Computer Systems Technology in December, 2012. “I heard about the scholarship during my senior year of high school and I thought I’d try applying for it because I knew I wanted to go to college. I didn’t want NF to hold me back,” tells Jeremy.

After completing the program at BCIT, Jeremy immediately began his search for employment in the computer industry, but unfortunately has not been able to find a job in that line of work. “It seems every employer is looking for past experience in the field, so I started looking for jobs in other areas,” Jeremy shares. He was determined to obtain work and was employed at a grocery store. Unfortunately, due to a lack of understanding and patience regarding NF by his boss, Jeremy was recently laid off. Jeremy continues to work on broadening his computer skills on his own time in order to increase his employment options.

NF has affected Jeremy's mental processing and his ability to retain information which has been a challenge in his schooling. “In high school, I had the challenge of keeping up my good grades by spending so much time on my homework that I didn’t have much of a social life.” He also had to overcome struggles in college at BCIT. “The workload at BCIT for the full time program got too overwhelming for me in the third semester.” Jeremy decided to finish the rest of the courses on a part-time schedule. It took quite a bit longer, but the important thing was that he succeeded in completing the program despite the struggles NF brought his way.

In addition to his learning disabilities, Jeremy was bullied growing up due to speech delays. “I had a hard time making friends and keeping them all throughout school,” tells Jeremy. “Since I was bullied so much, I became very shy which is something I’m still trying to overcome.” Jeremy shares that he still sometimes has trouble speaking clearly and articulating his thoughts, especially when excited or upset.

Jeremy enjoys playing video games, anime, and everything related to computers. He has overcome many obstacles and has not let NF stop him from achieving his goals. His strong work ethic and determination in life are to be admired and will take him far.

Ryan is a grade ten student from Vancouver Island, living with Neurofibromatosis Type Two (NF2). He loves video games and sports and is a walking encyclopaedia when it comes to sports teams and players, especially hockey. Ryan’s favourite team is the Washington Capitals and he even had a Make-A-Wish trip granted to meet his favourite player, Alexander Ovechkin.

Ryan’s mother, Simone, shares her son’s experience living with the disorder and how it has affected his and their entire families’ lives.

“Ryan was seven years old when he was diagnosed with NF2,” shares Simone. Initially he was misdiagnosed with Cerebral Palsy due to the symptoms he was experiencing. “He was falling down all the time, and after bringing him to the foot specialist, it was found that his entire left side was very weak.” She recalls wondering why it was taking her son so long to learn to tie his shoes and button up his own pants. “He had compensated so well with his right side that the weakness on his left side went unnoticed.” Ryan was put into casts and then into a brace to correct his walking, but by the end of the summer things had gotten worse. “His first day of school he could not even hold his head up to sing O Canada,” Simone recalls. It was after this incident that Ryan was rushed in for an MRI where a tumour the size of a grapefruit was discovered to be compressing his spinal cord. “He was rushed into surgery.” Unfortunately, this surgery was not the end of Ryan’s fight with NF2; throughout the years, more tumours have appeared and continuously grown. “His journey with NF2 has been one that has been a struggle at times, but one that has thankfully been closely monitored by the many amazing doctors he has seen.”

Simone recalls how difficult the first few years of Ryan’s diagnosis were on her family. “Our younger son had to go on the back burner many times while dealing with surgeries or appointments for Ryan. You can imagine the strain dealing with a sick child has on a relationship. I cannot speak for everyone in the family, but for me, it has made me realize that nothing in life is guaranteed, especially your health.”

Simone hopes that her son’s future will be fulfilling and filled with happiness. “I remember when he was born, counting his little fingers and toes and counting my blessings that we had a healthy baby, and while things did not turn out the way any parent would ever imagine or want, he is here with us and he is a handsome and strong young man. I hope that as he becomes an adult he finds someone wonderful to share his life with and to be by his side throughout this journey and to make him always look up and live life to the fullest.”

Simone shares the most profound moment in her son’s journey with NF2. “The kids in class had made kites to send up to heaven with their wishes.” Most children wished for typical childhood pleasures like puppies and Lego sets. “Then I got to Ryan's kite. On his kite was a little box with a First Aid symbol and it said simply, my dream is to heal.” She still has the kite to this day.

“I cannot make this go away for Ryan and I know that both his father and I would take it on in a heartbeat to spare him. All we can do is hope that Ryan's journey with NF2 has as few hurdles as possible and that someday a cure is found.”

Andrea Meadows lives with NF1, but she has never let the disorder define her life or stop her from achieving her goals.

Andrea received an Educational Scholarship from the BCNF in 2006. She used the scholarship to begin her schooling for her Early Learning and Childcare (ECE) Diploma, which was a two year program at Keyano College in Fort McMurray, Alberta. She has spent the last three years at Vancouver Island University in Nanaimo, BC, and recently graduated with a Bachelor of Arts in Child and Youth Care. She still plans on doing either a Master’s program or a business program in the future. “I worked part time in after school programs and residential homes while in school,” says Andrea. She is currently working full time at a daycare and hopes to find a full time position in the Child and Youth Care field. “I also do gardening and odd jobs for people in my neighbourhood on weekends and evenings.” When Andrea was six months old, her mother, who also suffers from NF1, noticed birthmarks on her daughter and suspected that she may have the disorder. She saw a doctor at that time who said it was likely that she had NF1. When she was a teenager, she was sent to a genetic specialist due to sore knees and a sore hip. It was then, at fifteen years old, that the diagnosis of NF1 was confirmed. “NF has never really affected me too much,” tells Andrea.

Andrea shares that the children she works with are often curious about the marks on her body. “I explain to them that I have had them since I was born, just like some people are born with brown eyes and some people with blue eyes,” tells Andrea. She says the kids think it is neat because they see shapes in some of her birthmarks such as a butterfly on her shoulder. Although she is not sure if her current boss knows about her NF, Andrea shares that she is very open and honest about her condition. “I am not afraid of ever being fired or judged due to my NF,” says Andrea. “I work in a field that is supposed to be very inclusive of all people no matter their culture or disability.” Andrea shares that if anyone in the workplace ever judged her or viewed her differently because of NF (which does not affect her work performance); it is not somewhere she would want to work.

I HAVE ALWAYS BEEN VERY OPEN AND HONEST WITH PEOPLE AND NOT AFRAID TO TALK TO THEM ABOUT NF.

“I was teased about the birthmarks on my neck in school,” Andrea shares. She did not know much about NF when she was a child other than the fact that she had it. “I mostly ignored the teasing, but at some points in my life I became very withdrawn with the kids my age,” says Andrea. “I spent all of my recesses and lunch breaks being a crossing guard or monitor for the younger kids.” When she got older and learned more about NF, she was
able to explain to her peers why she had the birthmarks and what they were. “I was then able to laugh off the comments and teasing,” shares Andrea. “I have always been very open and honest with people and not afraid to talk to them about NF.”

Since Andrea works with young children, she has at times noticed suspicious, numerous birthmarks on some of her students. She hesitates to mention NF to the parents. “Approaching parents about something that may be 'wrong' with their child is a very difficult thing to do. I have had good experiences and very bad experiences in the past when talking about behaviours or delays the children I work with may be experiencing,” Andrea shares. “I have mostly just seen a few birthmarks on the kids. If I was really concerned, I would definitely approach the parents.” Andrea also worries about future children of her own. “I am nervous about how badly my future children could be affected,” says Andrea.

When she is not working, Andrea loves kayaking, gardening, walking, and camping. “Now that I am finished this part of my schooling I hope to have the time to spend on my hobbies.”

LOOKING FORWARD TO TODAY

Danielle Catharina Lyons, known as “Dani,” is a four year old little girl who lives each day to the fullest and enjoys each moment. She is a carefree child who looks for the fun in each day. Dani has a twin sister, Paige, and an older brother named Brandon. Dani’s mother, Andréa, shares her experience with Dani’s recent Neurofibromatosis Type One (NF1) diagnosis and how it has affected her family.

Earlier this year, Dani visited a dermatologist at BC Children’s Hospital for an unrelated issue. It was then that the doctor noticed café-au-lait spots, bone deformities on her legs, a larger head circumference and some developmental delays as compared to her twin sister. The doctor suggested that they explore the possibility that she may have NF1 and that she be seen by an ophthalmologist to see if there were any eye abnormalities that are associated with NF1. At their visit to the ophthalmologist on April 23, 2013, it was discovered that Dani has Lisch nodules on both of her optic nerves and the unfortunate diagnosis of NF1 was confirmed. From that moment, the Lyons’ family would be forever changed.

Although the news was shocking and upsetting to Dani’s mother Andréa, within 24 hours she jumped in with both feet ready to face the situation head on. “When I found out – I was really fairly quick coming to terms with it. As a parent all you want to do is take away their pain and you would gladly exchange places with your child so they do not have to feel one iota of suffering,” explains Andréa. “However, when I learned about NF1 and learned that there was no cure, I was quick to decide that I was going to learn all I could, be an advocate for raising funds, and help mitigate any symptoms for her the best I could.” Andréa quickly learned about the NF foundations in the States and was in contact with research centers at BC Children’s Hospital. She even signed up for a marathon and immediately started an awareness campaign and fundraising.

At the time of this interview, Andréa has fundraised just over $7,200 and has two more fundraisers planned for the near future. All of the funds raised will go directly to the BCNF.

DANI ISN’T CONCERNED PAST THE END OF THE WEEK. SHE IS JUST LOOKING FORWARD TO TODAY – WHAT FUN SHE WILL HAVE AND HOW HAPPY SHE CAN BE IN THE MOMENT

“We have reached out to our local community including fire fighters and friends, and they have come back in spades with their generosity,“ tells Andréa. Andréa is quite familiar with the local fire hall, due to her involvement with Search and Rescue and her career in emergency management. After being featured in her local newspaper to highlight an upcoming fundraising event, she received a call from her local fire hall. "They expressed their sadness when learning of Dani's condition, and asked that I bring Dani down to the fire hall for something." When they arrived, all three of Andréa’s children were treated to fire truck tours and even got to pull the fire truck out of the hall with the lights on. “Then the crew on shift presented Dani with a card (inside was a $500 cheque) and a stuffed Dalmatian dog with a fire hat on – which hasn’t left her side.”

Another fundraising contributor is Andréa’s staff at BC Hydro where Andréa was a profiled employee for a few weeks and was able to promote the cause. Through this, she managed to raise approximately $750. A local grocery chain called Thrifty Foods has also been a huge support. Through their generosity, approximately $3,000 has been raised at fundraising events.

When asked about the challenges their family has faced since Dani’s diagnosis, Andréa explains how hard it is to wait for doctors’ appointments and not knowing what to expect for her child’s future. “It’s like watching a storm come in off the ocean… you don’t know if it’s going to hit the shore or just sit out on the water,” Andréa shares. “Right now we are waiting to see if there is another wave coming at us and getting ready to batten down the hatches in case the storm does rage.”

Like all mothers, Andréa has hopes and dreams for her daughter. “When I first learned of the diagnosis, my heart stopped for a moment and I wondered if I would ever be able to see my little girl walk down the aisle and get married – funny how I went straight to that life event, but nevertheless I did.” Andréa shares that in the short amount of time since Dani’s diagnosis, her daughter has taught her a significant lesson: to live each day to the fullest and be happy in the moment. “Dani isn’t concerned past the end of the week. She is just looking forward to today – what fun she will have and how happy she can be in the moment,” shares Andréa. “I hope for her to continue to live in the moment and take each day as it comes in her determined little way.” Dani has already expressed interest in becoming a doctor and likes to “treat” everyone in the house. “She has a little doctor’s kit and puts Band-Aids on her siblings.”

Andréa hopes that Dani finds her passion in life and follows it with every fibre of her being, despite the inevitable challenges she will face from NF.

Ross Phillips is a 66 year old from Delta, BC, living with Neurofibromatosis Type One (NF1). NF1 has been in Ross’ family for five generations. His mother also had NF1, which was called Von Recklinghausen Disease at that time. Two out of four of Ross’ siblings inherited NF1, including Ross. Fortunately, Ross has a fairly mild form of the disorder and does not have any internal tumours. He has had a few elective surgeries to remove surface tumours from his skin. When asked how NF has affected his life, Ross proudly states, “I think it has made me stubborn. If someone says I can’t do something, I like to prove them wrong.” Ross has two children and two grandchildren, who fortunately do not have NF.

Eight years ago, Ross suffered a sudden stroke in his home while having a bath. He called to his wife who worked at Vancouver General Hospital (VGH), who knew his symptoms were that of a stroke. She called 9-1-1 immediately. Thankfully, Ross has almost fully recovered from the stroke, but he still cannot drive. Ross suffered brain damage and his brain does not receive messages from his eyes. His balance is also affected.

Ross is now retired, but he worked in the software industry for ten years. Before that, he worked for the Hudson Bay Company, managing all of the restaurants in British Columbia. In his free time, Ross loves painting and sketching. He also enjoys working with stained glass. He used to enjoy pottery, but hasn't done much of that lately. Ross used to be a long distance runner and has always had a passion for running. Even after all of the challenges Ross has faced due to his stroke, he still walks/runs three miles a day. Despite a few falls due to his poor balance, he puts one foot in front of the other and never gives up!

Jeneece Edroff is a nineteen-year-old
philanthropist from Victoria, B.C. who is known to many on Vancouver Island as “the Penny Girl” for her fundraising efforts – she has been credited with raising more than $1.5 million through penny drives, beginning at age 7.

Jeneece has Neurofibromatosis Type One (NF1) and has undergone multiple surgeries due to the condition. Despite her struggles, she has always been determined to help others facing similar hardships.

Jeneece’s latest fundraising accomplishment was to create a home-like facility called Jeneece Place for families enduring medical treatments in Victoria. Dealing with a childhood illness is stressful for the entire family. Having a home away from home while undergoing medical treatment helps ease that stress for families.

Jeneece’s mother, Angie Edroff says, “Over the years when traveling to Vancouver for Jeneece’s medical care we spent a lot of time at the Ronald McDonald House. There were times we could not get a reservation there because the house was full. It was at these times that Jeneece mentioned that maybe we should help them build a new Ronald McDonald House in Vancouver.”

The Edroff family tried several times to make that happen, but they kept running into obstacles along the way. “When talking with some folks in Victoria, they asked Jeneece what she wanted to do next. She spoke about her wish to build a new Ronald McDonald House in Vancouver and the roadblocks. It was then that we learned that there was a need for such a house right here in Victoria.” To Jeneece, building a home in her own community that would serve the people on Vancouver Island and the Gulf Islands was far more than she could have dreamed of.

Jeneece Place opened its doors in January of 2012. It is a comfortable “home away from home” for families facing medical treatments at Victoria General Hospital. Jeneece created the floor plan of the house, for all three levels. The architect took those plans and did his best to put what she wanted into the house. This included a movie room, games room, and an arts and crafts room. The house is a 10,000 square foot, ten-bedroom facility. It has a very welcome and peaceful environment along with the many comforts of home. The house is decorated with artwork donated by local schools and artists, including a giant penny that Jeneece helped sculpt.

Jeneece is an ambassador in the house while a housemother is in charge of the house and all the volunteers. “On holidays we go and cook for all the families that are in the house at that time,” says Edroff.

The house took nine months to build and was built with the help of more than 2200 gifts, from a few dollars to $1 million. The Edroff family is looking to build another house on the island by the hospital. “Jeneece Place is now full more than fifty percent of the time so there is a need to build another one”. Jeneece also has dreams to build a house in Nanaimo. In addition to her fundraising for Jeneece Place, Jeneece has been involved in fundraising for the Easter Seal’s 24-hour Relay, the BCNF, BC Children’s Radiothon for the Kids, Cops for Cancer and is a Junior rider in the Tour de Rock.

Jeneece finished high school in June, 2012. She would like to become a Child Life Specialist and plans to help out at Camp Goodtimes, a camp for kids living with cancer, this summer. She also has dreams to volunteer at the local hospital. This fall Jeneece wants to start at Camosun College to further her learning. “She likes to play guitar, and is learning the ukulele,” says Edroff. Jeneece continues to face medical challenges due to her NF and will soon be undergoing yet another surgery, this time at the Mayo Clinic in Rochester, Minnesota to remove a plexiform neurofibroma from her right leg.

For more information on Jeneece Place or to make a donation, please visit jeneeceplace.org.