I first learned about Maddox when my own 2 boys told me their school, Arroyo Vista, was raising money to help a first grader who had tumors and was fighting something called NF. They excitedly told me how they even got to meet him and that everyone was calling him a real life superhero. They wanted to help raise money and bring it to school for him.
I took to the computer and looked up what NF was, because like most people I had never heard of it and had no idea what it was. After a few paragraphs in I couldn’t read anymore. I could feel the tears at the corner of my eyes as I thought of what this mother of Maddox must be feeling. The selfish part of me started to imagine what I would do if one of my own children had NF. My heart and soul silently lifted her up in a prayer.
I then turned my attention to viewing the website about Maddox. The first photo I saw of him melted my heart. Here was a little man that had the biggest smile and the brightest eyes that seemed to dance with joy. This little guy truly was a super hero and was in the battle for his life.
Then a vision came to me: I could see him in a cape with boxing gloves and showered in natural light. I could then blog a post about NF and bring awareness to this little known condition. Social Media to the rescue! Through a mutual friend I contacted Maddox’s mom, told her of my idea and asked if we could do it.
The thrust of this post is not only to visually show the world this super hero, but to educate as many people as I can as to what Neurofibromatosis or NF is. The best way to connect us as humans is to personalize something. I could read about a random disease with no real effect to me, but when I connect it with a real person it starts to penetrate me. The best way to learn about NF is to hear Maddox’s story from his mother’s own heart and words.
Following is her story, her journey, her heart.
Born a Fighter
by Nicole (Maddox’s Mommy)
Maddox was born a fighter. I could have never imagined when he was born that he would one
day have to endure so much. I’ve always said he was born extra strong and extra special.
Maddox was monitored by doctors from a young age because of his small size, but nothing ever
came of the visits. It wasn’t until he was about 3 and half that things started to drastically
change.
day have to endure so much. I’ve always said he was born extra strong and extra special.
Maddox was monitored by doctors from a young age because of his small size, but nothing ever
came of the visits. It wasn’t until he was about 3 and half that things started to drastically
change.
He was falling and getting hurt, he had headaches and was overly tired, and he seemed to be regressing in his development. We scheduled an MRI to follow-up on a lump at the back of his head that had been previously misdiagnosed as a lymphangioma. I will never forget the moment we learned at Maddox had water in his brain, likely caused by a lesion found on his brainstem. He went in for an emergency surgery to relieve the hydrocephalus, and we were told they could not biopsy the lesion because of its location. Complete hysteria set in, and we waited for hours hoping and praying our sweet boy would wake up from his surgery.
When the neurosurgeon came to greet us after the surgery, he told us he believed Maddox
might have Neurofibromatosis, or NF. We breathed a sigh of relief because this meant that the
brainstem lesion would most likely be benign if he had NF. We rushed to Maddox’s side and
found him happy and alert and back to his happy, spirited self. We blamed ourselves for not
realizing he had been sick for so long because of the hydrocephalus. Between tears of sadness
and tears of relief that Maddox was alive, we began to learn about NF.
might have Neurofibromatosis, or NF. We breathed a sigh of relief because this meant that the
brainstem lesion would most likely be benign if he had NF. We rushed to Maddox’s side and
found him happy and alert and back to his happy, spirited self. We blamed ourselves for not
realizing he had been sick for so long because of the hydrocephalus. Between tears of sadness
and tears of relief that Maddox was alive, we began to learn about NF.
NF causes tumors to grown throughout the body and brain. It affects 1 in 3000 births. There are three types of NF, with varying degrees of severity. It can lead to blindness, deafness, bone defects, loss of limbs, disfigurement, cancer. Fifty percent of people with NF1 have learning disabilities. Many have social and emotional issues. NF was accompanied by a very long and difficult list of possibilities for Maddox’s future. I wanted out. I wanted cancer and a quick path out. I wanted a bridge. Something less painful than watching my baby suffer through a life of pain and bullying. The questions and the unknowns nearly drove me to insanity. And I was still trying to accept that Maddox had a brain tumor and a major tumor called a plexiform neurofibroma that ran from his skull down to his T4 of his spine
I blamed myself. I must have done something to have caused this. Maybe it was too much caffeine? Maybe it was the chemicals from the perm I had when I was pregnant? When every doctor tried convincing me otherwise, I dismissed them, or I would find another thing that must have caused his NF. It was an extremely dark and painful time. And I just wanted an easier out.
Family and friends, neighbors and co-workers held me up when I could barely eat, sleep, or walk. They drove me to the hospital because I couldn’t drive myself. They held my baby in the waiting room because she couldn’t be with us inside the hospital room. When I was home, they came running when they heard my sobs. The acts of kindness were too many to track. All I know is I was lifted up in prayer and in love. I survived because of the love of others. And I started trying to see the tiny blessing and miracles along the way. Maddox laughing, Maddox picking a flower for me, breathing in fresh air and sunshine, the gift of life.
Time began to heal Maddox’s wounds and my soul. I decided I had to forgive myself and to learn to let go of the need to understand why and how this had happened to Maddox. I started reaching out to other NF families, but then had to withdraw because it was too painful to take in anyone else’s grief. I couldn’t even deal with my own.
The pain continued for Maddox. Three falls, three major breaks (his arm, nose, and collarbone) and another surgery later (to remove and biopsy a portion of his plexiform tumor), I was a complete wreck. I panicked about his every move. Finally school started and I was forced to take a break for a few hours a day. Maddox was bussed to a very small, very safe class for kids with special needs. He found joy there. I found joy there, as I was asked to teach them Spanish once a week, a job I had been forced to let go of when Maddox became very ill. It was so healing for me to do what I loved, and to do it with Maddox in that setting. I sensed that his teacher just knew we needed that.
Maddox’s NF diagnosis threw us into a new world of medical issues and special needs issues. It was very overwhelming. At the referral of Maddox’s pediatrician, we decided to try out the NF Clinic up at Children’s Hospital of Los Angeles. There we would meet Dr. Rosser, the first doctor we met who had experience with complicated cases of NF like Maddox’s. Up to that point, doctors were stumped at how to proceed. Doctor after doctor told me that they had never seen a case like Maddox’s before. Talk about unnerving.
Dr. Rosser was our own personal miracle. She halted an upcoming surgery to remove a portion of Maddox’s plexiform tumor that should have never been operated on to begin with. Dr. Rosser also mentioned the Children’s Tumor Foundation. We attended our first NF Walk in October, about six months after Maddox’s diagnosis. It was such an amazing thing to have so many friends and family surround us with their love and support at the Walk. And we could not believe how many people had donated to the walk in honor of Maddox. I think I cried for a good portion of the day
The following year I decided to make a video to share what Maddox had been through. I wanted to raise awareness by sharing our story. I had no idea how far-reaching that video would be. And I had no idea how therapeutic it would be for me to share what we had been through.
Three years later, I can look back on this journey we’ve been on and say that we are doing well, and I would dare say that we are now enjoying the ride. It’s weird to say that out loud, but it’s true. We have made good out of a really difficult situation. We are actively engaged in helping the cause, doing everything we can to help ensure a better future for the millions of people who live with NF. We are having fun along the way, having experiences and meeting amazing NF warriors who are just as invested in this cause as we are. And our community has rallied around Maddox and our family. So many people are invested in this cause. Nothing is better than that.
I would never have chosen NF for Maddox, but I think we are all better for having gone through what we’ve faced. Our family is pretty solid. Noisy and full of the normal everyday family drama, but solid. And most importantly to me, Maddox knows that we are doing everything we can to fight for him and his future. So with the cutest little NF warrior, we battle on!
