Sasha was born with several spots on her body we initially thought were birthmarks; but turned out to be cafe-au-lait spots. She did not show any signs of discomfort and seemed completely healthy otherwise. At the age of 2 years old, we became concerned and decided to consult with a doctor and met with two different physicians until one of them diagnosed Sasha with Neurofibromatosis (NF1).
At age 4, Sasha had freckling under her arms and developed tiny neurofibromas (benign tumors) throughout her body. This was puzzling and scary for us to see this happening to our little girl. We began yearly MRIs to monitor the progress of the plexiform on her brain and the neurofibromas. It was discovered that Sasha had an optic glioma in her eye that has appeared to remain stabilized after several years of monitoring by her ophthalmologist.
Several years ago we started attending the Texas NF support groups at Cooks Children’s Hospital. It has really helped our family understand this disorder and made us feel less isolated and alone.
God has blessed us with a beautiful daughter that has a bright future ahead of her. With the support of her family, friends, team of doctors and Cooks Children’s hospital, Sasha will have a better understanding of NF and realize that the disorder cannot stop her from achieving her goals and dreams in life. With continuous prayer and positive strides in the medical field, we are confident her body will have minimal complications. Thank you for coming out and making a difference in the lives of NF families, your participation in this fundraiser is greatly appreciated! We send love and prayers to all the new friends we have met, and together we can help all children affected by this disorder feel confident and loved.
Conley was only two months old when we first noticed a heart-shaped “birthmark” on his leg. We thought it was strange that a birthmark would just appear rather than be present at birth, and it resembled what we knew to be a café-au-lait spot. We Googled “café-au-lait spots” to get information on what can cause them to appear, and we were overwhelmed and terrified by the amount of information pointing to the spots as an indicator for Neurofibromatosis, as well as other neurological disorders. Our hearts were heavy as we contemplated what this meant for our sweet baby boy. Fast forward to his 1-year check-up and the one spot had now become many, with some being very large, along with axillary freckling – another indicator of NF. Rather than “wait and see” for other indicators to appear, we found a geneticist at Cook Children’s, who after looking at Conley, promptly told us that she is 99.9% confident in diagnosing him with NF1, without any other physical indicators. A follow-up MRI confirmed what we already knew in our hearts. Conley was 18 months old at the time of his official diagnosis.
The weeks and months after the diagnosis were spent gathering information and finding out as much as we could about NF and what Conley’s life could potentially look like. We attended our first NF Symposium in Houston not long after the official diagnosis, which was again terrifying, since we caught a glimpse of just how NF can physically take it’s toll on those afflicted. Conley is now 10 years old. Through the years he’s had many MRIs, neuro-ophthalmologist visits, and physical therapy sessions. He has an optic glioma that appears to be stable, as well as a plexiform on the inside of his arm. We count our blessings every day that Conley is only mildly affected at this time, knowing that anything can change at any time; nothing is guaranteed with NF.
Conley is kind and compassionate, always willing to share and to help others. He is also a passionate foodie at heart, so being the Jr. Chef this year is right up his alley! Conley has no qualms sharing his NF story and we hope that he encourages others to become advocates and champions for all NF families as scientists continue to work towards a cure!
Rhyan and her twin sister Rhyce were born a few weeks early. They both went to the NICU for breathing and eating issues. Rhyan was able to go home after 3 days; Rhyce had more challenges and stayed in the hospital for 7 days.
Rhyan was a fussy baby, we nicknamed her Cryin’ Rhyan. At her 4-month check-up, I asked our pediatrician about a “birthmark” on her belly. The doctor said she thought it was just a birthmark. Rhyan’s head measurements had increased more than normal, so she said she would monitor it. I noticed that her body to head proportions just didn’t seem right. I took a picture of the birthmark and sent it to our friend, Dr. Stephen Maberry. After our visit with Dr. Maberry, he thought she might have Neurofibromatosis (NF). He put us at ease by stating he has NF patients that are 80 years old and have lived very normal lives. He asked about her head size; I mentioned we were monitoring the increased growth. He consulted with our pediatrician and in two weeks, Rhyan’s head had increased 90% since her 4-month check-up. We scheduled our first of many sedated MRIs. Dr. Roberts, a neurosurgeon at Cook Children’s diagnosed her with hydrocephalus; a buildup of fluid in the brain. At 9 months old she had her first brain surgery to install a shunt. By age 3, Rhyan had freckling under her arms, diaper area and had a few fibromas (benign tumors). She was officially diagnosed with NF.
Rhyan has optical gliomas, tumors on the optic nerves, which are monitored with MRIs every year. Rhyan sees multiple doctors at Cook Children’s Medical Center. She has an oncologist to monitor the gliomas, a nephrologist to monitor her kidneys, and a cardiologist to follow her slight heart murmur. I am not sure there is not a department at Cook’s that she doesn’t see!
In 2011, Rhyan was diagnosed with a Chiari malformation, a condition where brain tissue extends into the spinal canal and syrinx, fluid filled cysts, in her spine. In August 2012, Rhyan had Chiari decompression surgery and she faced it bravely and like a champ! Dr. Roberts at Cook Children’s has performed both brain surgeries; we are very blessed to have him on our team.
Rhyan was diagnosed with ADD and possible dyslexia. Although she is not extremely hyper, she goes a little haywire without medication and her speech is difficult to understand.
From the beginning, she has had to have speech and occupational therapy. Progress wasn’t being made with her speech, so we asked for testing of her soft palate. Dr. Hubli determined her soft palate was not meeting the back of her throat. In 2014, Rhyan had soft palate reconstruction. She still struggles with speech and it has affected her ability to make and connect with friends at school. Last year, we found out a little boy was calling her names, hit her and stomped on her things.
With every health hurdle we overcome, it seems we are presented with a new problem we never imagined. NF is a fight Rhyan must battle every day; some days are more heartbreaking than others.
When Jake was about 4 months old, his pediatrician noticed numerous café au lait spots and provided us with information about Neurofibromatosis (NF). We had never heard of NF, so we did some research and honestly didn’t think much about it; Jake seemed perfectly healthy.
At about 9 months, his diagnosis of NF was confirmed. In addition to the café au lait spots, his other symptoms included an oversized head and a bone deformity in his right leg (severely bowed fibula). No one else in our family had NF, so Jake’s case was a spontaneous gene mutation.
Right before Jake’s first birthday, he had his first MRI. We had barely made it home from the hospital that day when we got a call that we needed to schedule more tests because they thought he had an aneurysm. After many tests and scans, it was confirmed that he had a brain aneurysm. We met with a pediatric neurosurgeon and at that time it was decided that they would follow the growth of the aneurysm very closely. Over the next 10 months, Jake had two MRIs, a MRA, a CT scan, two angiograms and an EKG, all of which required him to be sedated. At 22 months old, Jake had brain surgery to have the aneurysm clipped to cut off blood flow. Since the surgery, all his MRIs and other scans have been clear!
From the point Jake began walking; he has worn a brace to protect his fibula bone due to the bowing of his leg. He has to get a new brace every 9 months. When he was 3, he had surgery to remove a piece of his fibula. That didn’t slow Jake down a bit; he was up running around as soon as his doctor gave him the okay.
Jake is currently in 5th Grade, and he still receives speech therapy for articulation problems. He also struggles with dyslexia, ADD, anxiety, and sleep issues.
Though Jake has been through a lot, you would never know. He is an extremely happy and active boy! He has a sweet, caring personality that is contagious. He has many friends, loves to be outside, enjoys playing with his brother, playing sports, playing drums, and cheering for Texas A & M!
We started attending the Texas NF support groups several years ago. It has been great to visit with others going through similar situations. Texas NF is doing a great job spreading awareness of NF and we are proud to support them in this and other efforts. For the past several years, Jake has raised money for the Texas NF Foundation and has helped spread awareness of the disorder by selling Cure NF/Team Jake bracelets.
We are truly blessed to have a wonderful, caring, and supportive family, plus incredible friends and a compassionate community who have been there with us every step of the way! We thank God for all of the amazing things he has planned for Jake.
Go TEAM JAKE!
Although Kennedy has several visible birthmarks and other symptoms, she remained undiagnosed until she was 6 years old. During a routine checkup with a new pediatrician, the doctor noticed the birthmarks and several neurofibromas (small, fatty lumps). This led to questions about her health history and research into the family’s medical background. Upon learning that her maternal grandmother had a brain tumor at 31 years old and the shared familiar symptoms of similar birthmarks and neurofibromas, the pediatrician recommended the family see a geneticist and have blood tests to determine whether Kennedy has a form of Neurofibromatosis (NF).
The results were positive and Kennedy was diagnosed with NF Type 1. Based on the similarity in symptoms, it has been determined that Kennedy’s younger sister (Nora), her mother and grandmother all have NF Type 1. The diagnosis has helped explain health issues that Kennedy has experienced over the past few years including birthmarks, headaches, vision problems, slight scoliosis and delayed growth. The family feels fortunate that Kennedy has not experienced some of the more debilitating symptoms of NF Type 1, and rest easier knowing Kennedy’s team of doctors are proactively monitoring her health for any changes in tumor growth.
Kennedy is a compassionate little girl, and wants to do all she can to help others. She has been active in Cheerleading and last year she put her skills into action and began raising money for NF. Kennedy started a Cartwheel-A-Thon benefiting Texas NF, and plans to continue it every year to raise awareness and funding towards a cure.
Ethan was born in 2003. His first week of life was spent at Dallas Children’s Hospital undergoing tests that concluded with diagnosis of Neurofibromatosis Type 1. Like many NF patients, Ethan has been through CT scans, MRIs and various surgeries. This included the removal of his right eye. As parents, having a child with an unpredictable genetic condition is often a very difficult journey that stretches the emotions, heart and mind beyond capacity. Through it all, Ethan has taught us many lessons with his cheerful attitude and love for life. We are sustained by our faith in the Lord, and the constant support of family and friends. We are also grateful for skilled and caring medical people.
Ethan has an annual MRI as well as neurological, optometric and craniofacial surgical assessments. Since he was born, Ethan has been taking nutritional supplements. In 2011, Ethan underwent surgery to de-bulk the large tumor on his right eye lid. The surgery really helped Ethan functionally and cosmetically. Other than necessary monitoring, we have been committed to a non-invasive medical approach.
People who encounter Ethan, especially children, often ask questions about his condition and why he looks distinctive. This has caused us to consider how we should respond to this attention. We decided to write a card explaining basic facts about NF1 and how we respond to the condition. We have passed out thousands of these cards in multiple languages and we have seen an increase in awareness, understanding and empathy.
Ethan is homeschooled and doing work at an advanced level; he especially enjoys doing math. He has also been playing the violin for the past 7 years taught by his sister, Naomi.
My name is Tera and I am 46 years old. I was diagnosed with Neurofibromatosis at the age of 12 and it was the result of a spontaneous mutation of the gene. I often tell people that having NF type 1 is a blessing and a curse for me. People may find it odd that someone with a genetic disorder with NO CURE and NO EFFECTIVE treatment sees it at a blessing, but for me it has been a blessing in many ways. The first being my “extended” family. It is extremely difficult to be the only person in my family with NF. In fact, I had never met another person with NF until I went to the family camp that the Texas NF Foundation holds each September. It is the one time of year that I can truly feel comfortable in my own skin, worry about the stares of others and a time when I try to inspire the next generation to persevere through the barriers NF may cause.
Having NF has created challenges in my life. I have a severe case of scoliosis which has required multiple surgeries. Unfortunately, the doctors have been unable to keep my spine straight. In fact it continues to curve. Because of this I have chronic pain as well as a compressed nerve in my spine that causes pain in other parts of body. It makes walking and even driving my car difficult. There are many days that I wake up and do not want to get out of bed because the pain is so bad. Then, there are of course the extremely large plexiform tumors that are growing around my hips, buttocks and groin area. I have had two surgeries in an attempt to decrease the size, the surgery helped in the short term but these tumors are continuing to grow. I often have pain in these tumors and due to their size it can be difficult to keep the layers between them properly clean. If I get “bumped” in the tumor it will cause pain. The only way to describe the pain it like hitting your funny bone. It is also difficult to find clothing that fits appropriately.
Through all of the hard times and pain I still try very hard to maintain a normal life. I am married and work full time. I am also in college pursing my degree in history. I also love volunteering for any events related to raising awareness and money for research to end NF. It is part of my responsibility as someone with NF to spread the word that we not only need a cure but we deserve a cure. Is it fair to the parents of a newly diagnosed child to be told their child has a disorder with no cure? That there is no way to know how the child will be affected? That it is a progressive disorder that will possibly get worse as they get older? That the disorder can in some cases be terminal?
All I ask is that you take some time to put yourself in the shoes or an adult with NF or a parent whose child has NF. How would it make you feel? What would you do and how would you help to find a cure?
Connor is an intelligent, curious amazing 16-year old teen guy. He is currently in the 11th grade and while he is home-bound, he is an exceptional student. Connor loves learning, and especially enjoys computers and technology. He also enjoys studying languages, he completed 3 years of Latin and is still active in the Latin Club. When he’s not reading on his Kindle, he’s playing music on his electric keyboard, surfing the web, cooking, hanging out with his pets or riding his 3-wheeled bike. He hopes to be a music minister one day and plans to begin college course during his Senior Year in high school.
Connor is a blessed child. He has a very supportive family, church family and huge network of friends and supporters. He is passionate about fundraising for NF research and eager to spread awareness. Connor has a fundraising team ‘Connor’s Crew’ that works to raise funds for research. Connor’s Crew has a Facebook page and Connor prides himself in the size and scope of his team. He is indeed an NF hero! He doesn’t quite know or understand the depth of how he has touched and inspired many people already in his 16 years.
Connor was born a healthy normal active baby. At 16 months, after noticing his left eye turning, it was discovered that he had a juvenile cataract. His first surgery was performed at 18months. Following that surgery, it was noticed, during a routine follow-up, that Connor’s optic nerve was swollen. We rushed Connor for an emergency MRI and a lumbar puncture. Connor was found to have unexplained elevated cerebral spinal fluid. Connor had repeated lumbar punctures to check the fluid level & drain off excess fluid. During this time, Connor had 3 hour MRI’s every 6 months to monitor his brain. At the age of 4 we heard what every parent dreads. Connor had a brain tumor. Not having a proper diagnosis we all feared this to be a cancerous tumor. So, at the age of 4 Connor went through his first craniotomy. Following this surgery, with tumor tissue tested, Connor was finally given the proper diagnosis of Neurofibromatosis Type 2.
The diagnosis of Neurofibromatosis Type 2 was devastating and scary but at least he now had a diagnosis. Connor has endured 6 brain surgeries, thus far. In November 2011, Connor lost his right eye to an optic nerve tumor. After months of pain, Connor awoke from surgery & said “I never knew it could feel so good to have my eye out.” In October 2012, he had a craniotomy at the National Institute of Health that took 17 hours. This child is amazing! A week later, when staples were removed, Connor counted 64 staples from ear to ear and said it didn’t even hurt. Most recently, Connor’s battles are with seizures and anxiety caused by his brain tumor burden. His wonderful care team at Children’s Medical Center in Dallas is managing most of his health care needs. For 5 years, Connor was a part of a study at the National Institute of Health and traveled there every 6 months for 3-4 hour MRI’s, audiology testing and eye exams. With many battles still to face, Connor has a love for people, animals, life and God that remains untouched.
Thirteen-year-old Kylie is a fun loving eighth grader who has been through many obstacles in her life. When she was two months old, after the discovery of a plexiform neurofibroma and café au laits spots, Kylie was diagnosed with Neurofibromatosis Type 1.
Five eye surgeries later, she lost her left eye at the age of three. MRI’s revealed her tumor was still growing, which resulted in two more surgeries to “debulk” the plexiform on her head by the time she was five. She took a clinical trial chemotherapy that seemed to stabilize the growth of her tumors long enough for her to have a
break from surgeries. Currently, we are waiting on the FDA to approve a treatment that may help stabilize or even shrink her tumors.
Despite the challenges Kylie faces, she is unstoppable. She loves competitive cheerleading and playing the flute in her middle school band. Kylie thrives in school and enjoys reading her favorite books. She makes us laugh on a daily basis with her quirky personality and constant jokes. She has inspired many people participate in many
events and make a difference by promoting NF awareness.
With Great Appreciation from Kylie’s Mom & Family
The Haas Family
Our family has been involved in raising awareness and support for NF for the past 35 years. Our oldest son Luke is the fourth known diagnosis of NF1 in our family. NF can vary in its severity and our family has been challenged by plexiform neurofibromas, scoliosis and optic gliomas. We have been honored to help with various fund raising events and patients support programs that include Houston Highlights, running marathons, and providing craft projects at clinic.
We are so proud of how Luke has embraced his disorder. He does not look at NF as a block in his path but only a stepping stone to achieve something bigger than him. He began his endeavors at the ripe old age of three, where he hosted his first lemonade stand with all proceeds going to Texas NF. His slogan was, “If life gives you NF, make lemonade”. He is excited to continue his mission to spread awareness of NF and raising funds to find a cure.
Today, Luke is 8 years old and is an active third grader. He enjoys acting and spending time with his two little brothers William (age 6) and Charlie (age 11 months); who also help him with his mission to spread awareness of NF. Luke has a passion for cooking and plans to graduate from Texas A&M University and attend culinary school. He hopes that one day you will be his guest at his restaurant, the “Grilled Onion”; where I am sure he will use some of his proceeds to support the Texas NF Foundation. You can follow our family blog,www.mudpiesformommy.com, to learn more about Luke and his brothers’ efforts to fight NF.
We hope you will support the first annual “Cookies with Santa” event and that you will make this wonderful event a new family tradition.
Jennifer, Derrick, Luke, William and Charlie Haas
The Adair Family
Just a few days after she was born, sweet sassy, stubborn Serenity was diagnosed with NF1. Now, at four years old, she is the fourth generation of Adair’s to be affected by neurofibromatosis. Like her mom, aunt Amber and Uncle Willie, her numerous café ’au lait marks were the first indication that she had NF1. Serenity’s first MRI came before one (1) year old at Children’s Medical Center of Dallas.
Her follow up appointments have been with the NF clinic team at Children’s, where her mother, aunt Amber and Uncle Willie have all been patients. She loves making those trips because she gets to play with the doctors, who tell her how adorable she is. And, she gets to see her favorite person from the Texas NF Foundation… Cindy Hahn or Aunt Cindy, as Serenity has adopted her into the Adair family.
Neurofibromatosis affects the whole family in varying ways.
Serenity’s mom, Alisha, deals with fast growing fibromas that need constant monitoring, especially since Serenity’s birth.
Aunt Amber has been those one most affected by NF, having undergone about eighteen surgeries, ten blood transfusions and eighteen months of chemotherapy since the age of four. She currently has no vision in her left eye; scoliosis; she deals with migraines; narcolepsy and depression. Even with all that, she is a fighter. She shared her story on MTV True Life and on a local station, so people can get a glimpse of what it’s like to live with the challenges of this disorder.
Uncle Willie has also had his share of surgeries to remove fibromas, correct issues with his back due to scoliosis and there is constant monitoring of the fibromas that would require extensive surgery.
Serenity’s PaPa Willie, Sr. who inherited neurofibromatosis from his mother, diagnosed at the age of twelve, has dealt with fibromas his entire adult life. At that time there was not a lot of information about NF, so Willie and his mother often endured the looks and questions from people who did not understand. Willie was a fierce protector of his mother, and is still the family protector, especially where little Serenity is concerned.
The Adair family is very thankful for the Texas NF Foundation where information can be found on the disorder. They are also thankful for increased awareness and attention doctors are giving this disorder. And so thankful for the unbreakable bonds of friendships that have been made through four generations, in and out of hospitals; doctor offices; and events held by the Texas NF foundation. These friends understand what Serenity is up against and they will embrace her, help and encourage her when the road gets tough.