What the spots tell us – A parent’s story of Neurofibromatosis Type 1 (NF1)

February 7, 2014 at 2:51 pm 69 comments

I am writing this because when we first received Lyla’s NF1 diagnosis we were, smartly, told by doctors that we should not read blogs about kids with NF1.  Those blogs, we were told, are written by parents who have children in the worst case scenario.  I wanted to make sure for the parents who just received this diagnosis that there was something else out there when you google parents and NF1.

I have a beautiful daughter, Lyla. She turned five in December. She is in love with Toy Story, she throws fits, she tells knock-knock jokes that make no sense. She negotiates and barters for what she wants. She loves to IMG_0142read, tell stories and in her best moments she shares with her little brother.  When she curls up next to me my heart melts.

Lyla was born with cafe au lait spots – to the untrained first time mother they look like birthmarks. When Lyla was 18 months her pediatrician became concerned because Lyla had more cafe au lait spots then she was born with.  And we faced our first introduction to the medical term “neurofibromatosis.”  We met with a geneticist and we assured her that Lyla could not have it because this was a genetic disorder and no one in our family had it.  The geneticist looked at us, shrugged and said, in her stoic German accent, “disorders have to start somewhere, right?” – meaning “good genes mean nothing to neurofibromatosis.”  And so as the story goes, the DNA test results returned and Lyla, my perfect, beautiful little girl, was diagnosed with NF1.

NF1 is a tumor disorder. Lyla’s body will tell her nerves to make tumors throughout her life. Where there are nerves there can be tumors. Its potential is limitless. Even if the tumors are surgically removable there is a likelihood they will grow back. NF1 does not rest there – it has numerous other symptoms. Lots of children with NF1 get migraines, they have a 50% chance of having learning disorders, they have a higher occurence of bone disfiguration, they go through puberty early or late, and the list goes on. It is a super disorder with scary potential.

Lyla started having migraines and we found out a year ago that Lyla has tumor on her optic nerve (a brain tumor) and swelling in the middle of her brain.  And so we are now on the track of NF1 where we watch her, get MRIs, and hope, hope, hope that she will remain stable – that we can avoid chemotherapy, that she will be as normal as possible.  No one knows how this ends.

If you are a parent with a child with NF1 you are in a lonely, unique place. People will not understand, nor should they.  You will get mad when parents of other kids are overly concerned about allergies or ear infections. You will long for that type of simple. You will be told by doctors with poor bedside manner to change your expectations for your child’s life. You will be told horrific stories by random people about other illnesses or disorders in some weird attempt to connect with you.  This will be outrageous and ridiculous and you will smile and nod – because what else can you do? You will remember the time before the diagnosis fondly and laugh at what you worried about then (when will she walk, how can I make him use a sippy cup, is this a dairy allergy).  You will watch your child differently and at times your heart will be heavy.  This is your normal, your new normal. No it is not what you wanted or hoped for.  You are now a part of the “I never thought this could happen to me” group – and what a terrible membership.

But you can do this and I know you can because you have to. You will get up everyday and sing silly songs, paint pictures, watch “Toy Story,” snuggle, and  do all the beautiful things that make you a good parent.  Your child will excel because they are loved. Your child will be magic and strong and amazing because that is what special children do.  And no matter how hard it is or how lost you feel now I promise you that some days will be better, not all, but some.   It is okay to be scared for your child. It is okay to be mad. It is okay to want to yell at people who say things like “you seem to be handling it well” because what is your alternative really – you have to do well for your child.

But please know you are not the only one. And I promise I know you never asked for or wanted any of this – and it is unfair. But I also promise that at your weakest you are stronger than you know because this isn’t about you, it is about your child. And let’s keep hoping that there is a cure, better treatment and better understanding of NF soon. Until then, all of my best wishes for your child’s health and happiness.

End NF.

For more information on NF please visit The Children’s Tumor Foundation. 

For more on Lyla and NF1.


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Cassoulet for the mind – “Jeeves and the Wedding Bells” by Sebestian Faulks Finding home and maybe cookies – “Americanah” by Chimamanda Ngozi Adichie

69 Comments Add your own

  • 1. Anonymous  |  February 10, 2014 at 7:38 am

    Eloquent summary of a parent’s perspective. Thank you for putting your thoughts into words to share. I’ve been living this new normal for 16 years now and it never gets more comfortable, but I suppose that’s part of what fuels my fire to End NF. I also write a blog, http://www.nfsaid.blogspot.com

    • 2. Emily C  |  February 18, 2014 at 11:50 pm

      Thank you for being so kind. Your blog is awesome and I will keep reading it!!

  • 3. Kathleen  |  February 10, 2014 at 4:05 pm

    This is one of THE best explanations. We’ve been on this journey for 16 years with brain resection surgery, learning disabilities, optic nerve tumor and a host of other issues and no it is not easy, however my boys are my greatest joy. Through fundraising, educating others about NF and being proactive maybe, just maybe soon we will have a cure for NF. It’s important that parents receiving the new diagnosis of NF have a positive to help balance the negative. Great perspective, thanks!

    • 4. Emily C  |  February 18, 2014 at 11:52 pm

      This is all so hard and you have been doing it for so much longer. And you are right it is important to but energy into fundraising and awareness so that there is that positive force. Thank you so much for reading this and I wish you and your boys lots of happy days.

  • 5. Cecelia Bishman  |  February 10, 2014 at 5:22 pm

    What Lula doors have and is blessed with is a mother to help her journey through life and NF1

    • 6. Emily C  |  February 18, 2014 at 11:53 pm

      And a great dad and awesome Grammy:)

  • 7. Anonymous  |  February 11, 2014 at 7:59 pm

    Perfect! Thanks for this. We’ve been living with our new normal for almost 4 years, and you just captured it all!

    • 8. Emily C  |  February 18, 2014 at 11:54 pm

      Thank you so much. It is nice to hear from people going through the same thing.

  • 9. sheridegrom - From the literary and legislative trenches.  |  February 11, 2014 at 8:47 pm

    Beautifully written. I didn’t know about this disease before I read your blog. You are unmistakable in your description of the disease while weaving in the love of a mother for her young daughter.
    Yes, I know how it is when people ask why someone you love is in the hospital again, or whatever the case might be. In my husband’s and my case, his disease is invisible and therefore there shouldn’t be anything wrong with him.
    Thank you for writing from the heart and telling the truth.

    • 10. Emily C  |  February 18, 2014 at 11:57 pm

      Thank you so much. It was a tough one to write but I wrote in response to a bad week, a little writing therapy:). I am sorry to hear about your husband’s struggle. I wish you both the very best.

  • 11. Anonymous  |  February 12, 2014 at 5:51 am

    Beautifully written – this is the type of thing that should be given to parents of newly diagnosed NF kids.

    • 12. Emily C  |  February 18, 2014 at 11:59 pm

      Nf is so hard because its range is so wide. So I hope my blog didn’t scare anyone but at the same time I wanted to write something I wish I had at the beginning. Instead of walking around thinking “is what i am feeling okay.” I really appreciate you taking the time to read it and comment.

  • 13. bizigal  |  February 12, 2014 at 9:38 pm

    So, my son with NF1 is 19. He is in college. Here is the thing. When I was in your shoes, I worried too. But consider this; whatever your daughter gets (nodules and fibromas) during puberty, is usually what she will have until she is about 40 years old. My son has more cafe au lait spots, more than you can shake a stick at. But he is healthy, needs educational intervention, and gives the best hugs a child can give. ! Good luck. You will get through it. But be sure to get IEP help p at school asap.

    • 14. Cindy Barry  |  February 17, 2014 at 12:11 pm

      it depends, my 4 children all have nf in various stages, 3 fairly minorly , but my eldest has had major complications, it has heavily impacted her life and continues to affect her everyday life. it can be hell.

      • 15. Emily C  |  February 19, 2014 at 12:05 am

        Cindy, that is a lot to handle. I hope you have a good support system. You will certainly be in my thoughts. Best wishes.

    • 16. Emily C  |  February 19, 2014 at 12:01 am

      Thank you so very much. A beautiful son who gives the best hugs is amazing gift. We are on the IEP track so thank you the reminder because I need to starting working on that for the fall.

      • 17. bizigal  |  June 13, 2014 at 10:56 am

        Please don’t wait on the IEP….there is so much red tape. Nothing happens quickly. I have a rule I go by when dealing with the school….”It is not personal, it is just business.” Good luck.

  • 18. Dixiana  |  March 11, 2014 at 12:55 am

    Thank you for writeing this I’ve been scared . Sad, mad all you said what i feel i feel alone nreminded that health is not guaranteed and that anyone can develop medical issues at any moment like my son and others with nf1…

  • 19. Dixiana  |  March 11, 2014 at 12:58 am

    Heres my story.. Cristian’s Story: Surviving Neurofibromatosis

    A warrior.

    That’s how Dixiana describes her 6-year-old son Cristian, of Chicago City. Despite his ongoing battle with a disorder, neurofibromatosis (NF1) Cristian’s continues to inspire and bring smiles to everyone he meets. When Cristian’s was nearly 3months old, he developed what doctors refer to as “café au lait” spots on his skin. Dixiana also noticed that he seemed to be having more at age 5. Dixiana noticed one summer 2012 Cristian had hair in his private area strong manly smell in his under arms felt she had to take Cristian to a doctor right away.

    Dixiana brought Cristian in to the doctor his pediatrician before she send Cristian to a specialist he had to get some test done blood work x ray of his bones and urine. A week later results were in Dixiana received a call from pediatrician the results were as she expected high hormones she explained that his bones were developing like a 14 year old boy and he was going through puberty it was like a 5 year old stuck in a wrong body. Since summer 2012 and start school year 2013 Cristian changed completely from a child to a young man but he trying fight and be a little boy again with this he would need help from a specialist just a few days before Halloween 2013 The doctor recommended see specialist and to buy him deodorant.later after He had an MRI done to see if he had a tumor along with eye exam with an Optometrists to see if this affecting his vision (NF1) can cause problems in the way the body functions also went to talk to hormone specialist and another doctor specializes in (NF1) The doctors going over his tests of high hormones making him grow and hitting puberty early and the “café au lait” spots they diagnosed Cristian with neurofibromatosis type 1 (NF1), which is a syndrome that can affect many parts of the body, including the brain, spinal cord, nerves, skin, and other body systems. NF1 can cause growth of non-cancerous tumors on the brain nerve,also produces skin and bone abnormalities — and for which there is no known cure. The diagnosis Dixiana took it hard one because she was expecting and knew she had to be taking care of her new born and be at Cristian’s many appointments she had gone through 4 appointments in the month of October.That Thanksgiving was incredibly tough. She was dealing with her sons devastating diagnosis. Lets back up Cristian was born premature 4 pounds he stood in the hospital for a month (in the NICU) Dixiana didn’t even get a chance to hold him when he was born and till age 2 he had been getting nurse come check on him at home and at 6 months he started receiving services for therapy he was late in many things for example grabbing a toy and speech also he was born feet outward and Dixiana took him to a Orthopedic and from there hospital made him braces to make his hone develop normal if not his feet didnt progress hes get surgery but all went well.Dixiana did all She could to pull herself together and make it a happy Thanksgiving for her Family.” Dixiana couldn’t believe again Her son had to be in a hospital most of the time but now with a disorder theirs no cure just Doctors telling her take it one day at a time.

    In terms of Cristians ongoing treatment, he had surgery get implant help him stop going through puberty and maybe calm his adhd that (NF1) caused. Learning disabilities occur in about half the children with NF, some might need extra help in the classroom. “Surgery hit him hard,” says Dixiana. He continues to suffer from effects he will never understand this disorder is genetic but none of Dixiana’s or her husband family have this so Cristian’s may be the first to pass it to his children because it affects one child and then passes on. The good news is after surgery hormones for puberty were under control but now it was him growing that was an issue.They continue to test him his test was to be without eating 4 hours he missed school for this test and put an IV and every 30 min get blood out of him and he had drink juice to see his hormone level to check if he was still making too much growth hormones Dixiana had to go for the results Feb 13, 2014.

    Cristian’s most recent results he will see physiatrist to talk about his adhd he needs another MRI atleast 2x a year check he does not get a tumor on his head because thats the side affect of (NF1) Cristian will be getting his heart checked to see if its growing and a sleep study because he hardly sleeps well. The medicine to stop him from growing and having health issues are 3 shots everyday or 1 time a month but that shot has never been tested in kids the doctor doesn’t know the side affects “We’re all praying for a miracle,” says Dixiana.. Doctors are hard at work in search of better treatments for Cristian and other kids and adults living with NF. Until then, only thing Dixiana’s does cheer her son up and make him happy because all he says is ” Mom why cant i be normal”It’s a lifetime disorder, she says and that our family never knows when their will be good news or bad all Dixiana knows she has never met a boy as strong as her son Cristian!

    • 20. Anonymous  |  March 11, 2014 at 4:09 pm

      My thoughts are with you and your family. Thank you for sharing this.

  • 21. Anonymous  |  April 29, 2014 at 10:14 pm

    Well said… thank you.

    • 22. Emily C  |  April 30, 2014 at 8:19 pm

      Thank you for reading my post.

  • 23. Anonymous  |  May 22, 2014 at 9:41 am

    Well put! So hard to explain NF to others, and you did a great job of explaining the unknowns involved. Thanks!

    • 24. Emily C  |  May 22, 2014 at 4:40 pm

      Thank you and thank you for reading it!

  • 25. Anonymous  |  May 22, 2014 at 11:21 am

    I needed to read this today. Our boy is 7 & was diagnosed at 1 with NF1. We have been so stressed w worry for him. He has shown signs of learning disabilities & is on an IEP plan. We have annual check ups at the Mayo Clinic in Rochester – but it has been a long, long road to get to this point.

    • 26. Emily C  |  May 22, 2014 at 4:40 pm

      I am sorry you have this burden. I hope that his IEP plan is effective and is helping him. Please know you are not alone. I am sending positive thoughts to you and your son.

    • 27. bizigal  |  June 13, 2014 at 11:00 am

      Hi. Here is the thing…right now, your son is 7 and the school can handle it. But when he gets to middle and high school the curriculum will get harder. My advice as a mother of a 19 year old in college with NF1, don’t let the school talk you out of any services because they think he is making progress. This was my mistake early on. Keep a very strong IEP. You will need it later. You son can do the work, but he will need interventions each year. Good luck and let me know how things go. I care.

  • 28. Anonymous  |  June 10, 2014 at 5:35 pm

    I couldn’t have said it any better. This is exactly what my Hannah and I have gone through. Tumor on her optic nerve and one on her brain stem. She was diagnosed at 6 months and it now 15. It DOES NOT RUN IN OUR FAMILY EITHER. She is a beautiful outgoing girl. The tumors remain stable. Know your not alone! Xoxo

    • 29. Emily C  |  July 29, 2014 at 6:40 pm

      Thank you and best wishes to you and your Hannah!

  • 30. dianeledet  |  July 6, 2014 at 2:05 pm

    Thank you for sharing your story with your readers. I am sending healing prayers to you and your precious daughter.

    • 31. Emily C  |  July 29, 2014 at 6:41 pm

      Diane, thank you!

  • […] daughter, Lyla, who has NF1 had a tumor along her optic nerve in her brain. And so we learned that NF1 likes to keep life full of surprises. At the time of this news I had Lyla, who was 4, and my son, […]

  • 33. Lis cox  |  November 3, 2014 at 9:52 am

    my son has nf he is only 13 month and no one else in the family has it that we know of yet.

    I am having a terrible day today and am so sad about it today. I have been trying to remain positive but today I just can’t. this sums up how I feel so amazingly. thank you for reassuring me these feelings are ok. best wishes to you and your family and thanks again.

    • 34. Emily C  |  November 3, 2014 at 4:38 pm

      I am sorry about your son. It is okay to have bad days. It really is. Because some days you will have to be strong. Please take care of yourself.

  • 35. Ong  |  April 9, 2015 at 2:16 am


    Thank you very much for sharing your experience, it really help to know there is a group & and a foundation to reach out to

    Like yourself and others posted their comments – we too have a wonderful baby girl diagosed with NF1 and she has droopy eyelid or what the doc refered to as plexiform tumor. She has some spots too, and she is turning 1 year old in less than 30 days 🙂

    I was actually trying to find out how, as a parent to explain the cause of the her eye/eyelid to my elder daughter and other curious kids whenever we are out. While we still can explain to our elder daughter (5 yr old), i mostly pretend i did not hear other kids asking their parents why my baby girl has a strange looking eye. I feel like someday i need to have a kid-friendly answer so it is easier for us & her to mix in … and i also want to think i have some way to answer other condition that might or might not turn up one day

    Please feel free to share my email address, in case there are other places on the internet discussing this topic. Many thanks

    • 36. Emily C  |  April 9, 2015 at 9:04 am

      Thank you for sharing your story, and your daughter’s story. Finding a dialogue that works for children is so hard. That balance between being honest but making it age appropriate is so complicated. I hope we can all find ways to talk to our kids and the people in their lives in a way that is thoughtful and helpful. Best wishes to your family.

  • 37. Brittani  |  September 3, 2015 at 12:45 am

    Thank you. Just, thank you.

    • 38. Emily C  |  September 3, 2015 at 11:54 am

      You are welcome. All the best to you and your family.

  • 39. Lindsay  |  September 7, 2015 at 10:45 am

    Thank you so much, my 7 year old son was just diagnosed and going for an MRI of his brain soon, I’m terrified but trying to act calm for him. I’m glad that there are other parents out there willing to share feelings and info. Thanks again.

    • 40. Emily C  |  October 13, 2015 at 7:46 pm

      I am sorry for some reason I missed you comment before. I hope his MRI gives you the reassurance you need. And please remember even if they find something it does not necessarily mean intervention is needed. I will be sending positive thoughts your way.

  • 41. Erika  |  November 4, 2015 at 12:07 pm

    Thank you for share!!!
    Do you know what is the difference between nf1 and segmental nf1?
    I have been so scare during this week, all of this is new to me ….thank you so much ..you will be certainly in my thoughts. .

    • 42. Emily C  |  November 4, 2015 at 8:14 pm

      Yes. Segmental NF1 is where it just affects a certain part of the body – sometimes just one side or one area. Below is a brochure from The Children’s Tumor foundation specifically about segmental NF. Just for when you have had time to process and want to read more.

      Sending many positive thoughts your way!

  • 43. Anonymous  |  November 29, 2015 at 4:24 pm

    Thank you for writing such a wonderful piece. My daughter is 7 and is exactly the same (NF1, optic glioma) and you have managed to get down on paper everything I feel but so very eloquently.
    Thank you X

    • 44. Emily C  |  November 30, 2015 at 12:19 pm

      I am glad. It feels good to see all these replies. It can feel lonely for all of us.

  • 45. Kelly Montavon  |  November 29, 2015 at 6:37 pm

    This is so well written. It totally captures how I feel as a mother of a child with NF1. Zach is 12 years old and was diagnosed a year ago with a tumor on his brain stem. He has been through more than his fair share. Despite this, he is a happy, loving and funny kid. The tumor has grown slightly so we pray everyday that it stabilizes. It’s good to know that we are not alone in the fight to end NF.

    • 46. Emily C  |  November 30, 2015 at 12:22 pm

      Our kids are amazingly resilient and just plain amazing. Even with NF, I think all of us NF parents are pretty lucky with the really great kids we have in our lives.
      I will keep Zach and your family in my thoughts. That he remains stable and smiling along the way. All the best.

  • 47. Gloria  |  February 24, 2016 at 11:05 pm

    I really needed to read something like this when my son was diagnosed at age of 1. I googled nf1 and it was all scary the things i read i got sad and worried. Son is 5 now And im not scare anymore like i was since the first day of his diagnosed.

    • 48. Emily Swanson  |  February 25, 2016 at 9:08 am

      I am glad to hear that your fears have diminished over time! That should be hopeful for folks who are just getting the diagnosis.

  • 49. hollyparrymanho  |  March 7, 2016 at 4:12 pm

    Thank you for writing this and telling the truth. My nearly 3 year old boy has NF1 a spontaneous mutation. I feel so alone on this unexpected journey. It helps to hear someone else explain how I feel, a truth that is too uncomfortable for most people to hear.

  • 50. Anonymous  |  May 25, 2016 at 9:21 am

    Thank You for sharing your story and it is so true and I wish I would have had this direction when our son was diagnosed at 18 months in 1996. At the time we still had dial up internet if that but we did have a large older Medical Book we looked up this strange name his pediatrician had suggested he might have. This was the worst thing we could have done because as you said it only described the worst cases and sent us on a lonely path of worry and what if’s. Most of our fears never came to be and while he has had challenges with NF1; Scoliosis, Learning Disabilities and a few others. Nothing to the magnitude of what worry had consumed us during the months following the diagnosis. He is now a 21 year old with a part time job and making a valuable contribution to society and our family. Not to say we are free of anything happening but you have to take it one day at a time and if anything comes up you get it checked out.

    • 51. Emily Swanson  |  May 25, 2016 at 5:40 pm

      It is good to hear he is doing well and that this journey has been manageable for your family!

    • 52. michelle goodwin  |  March 6, 2018 at 7:10 am

      What a fantastic comment. Puts it into perspective.

  • 53. Donna Palmlund  |  June 19, 2016 at 11:13 am

    And sometimes it does not affect a person much at all. My mom had it, but was only diagnosed with what was then called Von Reckinhausen’s Disease (NF1) in her 30s because of the pathology report on a large tumor on her arm, that the GP removed. (and did a bad job of it) She never went to any docs that knew anything about it and she did die of kidney cancer at age 49. The doc told her any of her kids who had the cafe au lait spots might “get some bumps someday.” He incorrectly said it was nothing more than a cosmetic concern. So I never went to an NF doc and I was not diagnosed til age 40 when we first got the Internet and I started doing some heavy research. The main thing that made me different as a kid, which I can now trace back to having something to do with NF, was that I was (still am) extremely uncoordinated. I got good grades, no learning disabilities . BUT I walked late, didn’t learn to ride a bicycle until I was 11, can not hit or catch a baseball to save my life, got made fun of in gym class. None of that has prevented me from living a normal productive life. My point for parents is not to strss out too much. Be aware of the possible complications, and find a doc that deals with this disorder, but don’t assume the worst.

  • 54. Anonymous  |  August 11, 2016 at 12:52 am

    Hey thanks for sharing! I’ve had bums on me for as long as I can remember. The thing is, we never got it checked out until I noticed more and more bums or nodules showing up on my scalp and body. Well I’m 22 and I just got diagnosed a few months ago,went too long before Checking them out with a Doc. NF1 is what I have and yes I was told that there is “no cure”. I don’t believe it for one min. I think there is something out there maybe herbal wise that just hasn’t been discovered yet…so I’m looking! Thanks again for sharing, I’m sure your daughter is great!

  • 55. Mary Lopez  |  September 5, 2016 at 12:06 pm

    My grandson was diagnosed with NF when he was a baby. He just turned 9 . He is doing well for now but is in the process of getting tested. MRI’s, neurological tests, etc, some growths have been found on his spine and this has suddenly become very real. I think I was in denial but the reality is that there have been signs along the way. I am so terrified for him! Finding this site is very helpful. Just knowing that you are not alone and that there are other families faceing the same fears as you and you can find support is a godsend. Thank youto all of you for sharing your stories. This will definitely be a place I can come too in the future for understanding this desease.

  • 56. Gerri  |  September 6, 2016 at 1:44 pm

    My granddaughter was diagnosed as an infant. We felt just as you did. She is 19 now. She was home schooled because of her learning disabilities, speech, dyslexia and dysgraphia. It was a real struggle in school. Throughout childhood there were not many changes except the cafe au lait spots increased. She saw her genetesist yearly and had the eye exams and MRI’s. At puberty the changes came, fits, tumors , at first just a few , as time went on they began to increase in number and size, on the pads of her feet , making walking difficult, on her spine, causing back pain and her torso face, etc. never knowing where the next one would appear, last year she started getting migraines. Despite everything Mabel is very positive about life. One of the reasons is the hope we have learned from the Bible about the future when all sickness will be done away with.
    Revelation 21:3-5 also
    Mabel was taught this hope from a very early age. When she was about 5 she expressed her faith in that hope when she asked if she would have her ‘colors’ (she called her cafe au lait spots, colors) when God restored the earth to a paradise and sickness was done away with. I told her I was not sure. She replied that she hoped she still would have them because they were part of he and made her who she is, ‘Mabel’.
    As I said Mabel is 19 now. She is in the full time Ministry sharing her hope with others about the future. For more information about God’s promises for the future visit our website JW.ORG


    • 57. Julie  |  October 9, 2016 at 8:42 pm

      Oh my goodness, we share the same hope! We live in Australia. It’s nice to know there are others with the same hope whose family members are also dealing with NF1.

  • 58. Julie  |  October 9, 2016 at 8:37 pm

    I’m 24 and my sister who is nearly 14 was only just diagnosed with NF1 a few months ago. I’m hoping that means she has it mild. She feels like my daughter only I can’t be there with her everyday as I just got married last year and now live an hour and a half away. It was helpful reading your description on NF1. My sister is such a happy and magical girl (only way to describe how bright, imaginative and creative she is) she has goals of being a writer one day and loves drawing funny cartoons. She hasn’t let this diagnosis bring her mood down at all, I think I feel sadder than she does. I think she keeps me strong.

    • 59. Emily Swanson  |  October 9, 2016 at 10:22 pm

      That is good to hear. I hope she keeps her beautiful spirit!

  • 60. Amanda Richardson  |  November 5, 2016 at 9:30 pm

    I loved reading this. My story is identical to yours. The café au lait spots appeared as birthmarks and he slowly has gotten more. He is happy and healthy. He loves toy story also. Thank you for sharing it is nice to hear from other parents.

  • 61. Christopher  |  December 12, 2016 at 10:42 pm

    Thank you. My son Daniel has NF1 and my wife and I do indeed feel alone and angry and sad. Your words and wisdom have given me hope again.

  • 62. Jamie  |  December 26, 2016 at 9:10 pm

    I am laying in bed crying with tears of joy knowing that I’m not alone in this scary fight for my strong courageous kido!! Thank you so very much for your kind words and strength. Thank you for giving me hope when I feel so weak and powerless with numerous doctors telling me “we can’t do anything for her but it’s ok, don’t stress!”… My precious princess is also 5 and tells her crazy jokes constantly and has seriously never met a stranger in her life. She hugs everyone, sometimes a little too much, and is filled with so much love. I noticed her “spots” as we call them at nine months and thought they were birthmarks as well, but her amazing pediatrician at the time mentioned NF. It took four very long years to finally get diagnosed and now we are trying to balance appointments and life. It is very stressful but we take it day by day. I just wanted to say thank you a million times for sharing your daughters story and for helping me to not feel so alone in the chaos that is NF. I was upset at first but am now relieved to know what is actually causing my daughters troubles at school and headaches and just to understand her a little more. Please hug your kido for me!! I pray that one day we can find a cure and eliminate this monster. Thank you again:)

    • 63. Emily Swanson  |  December 27, 2016 at 9:08 am

      You are not alone!!! We are all in this together. Many blessings to you and your sweet daughter!! I am so glad are story helped you.

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    […] can also read HERE about Layla, another little girl with […]

  • 65. Maria  |  April 19, 2017 at 4:52 pm

    I swear this article made me cry my son is 11 years old he was diagnosed barely yesterday with NF1 and my heart is heavy I look at him and think he looks fine but I know this is a serious condition and I want to thank you because your right I am going to fight for my son and I will be there for him
    Always thank you again so much you gave me some
    Strength and I needed it so bad at this moment

    • 66. Emily Swanson  |  April 27, 2017 at 9:29 pm

      I am sorry that you are going through this but you are not alone. Sending lots of positive thoughts!

  • 67. Gemma Armes  |  September 20, 2017 at 8:04 pm

    Lovely stort and very wise words chosen. I myself suffer with nf1 ive had many problems. Im currently being tesyed to see if i can carry. I have thickening on the optic nerve which has swelled up so its stopped a hormone of my working properly. I have 4 lumps that hopsital are refusing to remove. Ive had 1 removed. The lies i tell people about my caufe stains i tell them its a birth mark. Theres so many people that have judged me. I was 21 when i stopped wearing coats and scarved in the summer 😦 im 25 now

  • 68. Brittany  |  April 9, 2018 at 7:41 pm

    This is beautifully written, my son has NF1 and no one understands. We also found out due to all of his “spots” and he now lives with a plexiform nibroma on the base of his head/neck. It’s a crazy scary amazing ride to have a Hero child!

  • 69. Raymond  |  June 19, 2018 at 1:24 am

    Hi! I just want to know how you daughter has progressed and if you still feel the same way?


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