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Yoalli’s Story :: A Trip to Mexico, A Rare Diagnosis, & A Mother’s Unconditional Love

If you were to run into my family and I at, say, the local playground, you probably wouldn’t notice anything different about us. You would probably catch our daughter running around, chasing after her big brother. You would see her climbing up the steps to the slide, favorite doll in arms, my husband and I waiting for her at the bottom and cheering her on. Just your ordinary family having fun at the park.

But if you stay a little bit longer, if you look a little harder, you might notice that my daughter will soon grow tired and search the comfort of my arms. You will notice that when she runs towards me, her run is a little wobbly. If you only knew it took all her tiny, little strength — and months of physical therapy — to climb those steps up the slide. If you only knew she carries that red haired doll around because she has grown fond of the little French character, Madeline – the girl that is never afraid.

Yoalli's Story {Neurofibromatosis} - Houston Moms Blog

At only two years of age, with four specialists, three MRIs, and countless blood tests, our small daughter has had to learn to be brave. She has been diagnosed with Neurofibromatosis.

If you have never heard of the word and have no idea how to pronounce it, don’t worry. That was me two years ago before our daughter Yoalli was born. Everything was normal about her birth. I had a pretty good pregnancy and delivered naturally. She met all her APGAR test scores at the hospital. It wasn’t until a few weeks after we took her home that I started noticing the many birthmarks on her body – little brown, asymmetrical spots that seemed to be all over her. There was a big round one right below her knee, and another one just below on her shin. A large one shaped like a football covered almost half of her forehead. Then there were three {or was it four?} lighter ones under her chin. Were those dark ones on her belly there before? Was that a new one on her arm?

That’s when I started getting worried.

When I expressed my concern to a friend over the phone one afternoon, she suggested to just “Google it.” And so I did. Just to make sure, right? I knew I was probably just being “that mom,” the one that panics at everything. But just to double check. There was a ton of information about birthmarks on newborns: the mongolian spots, the cherry hemangiomas, the ones caused by bruising during birth. All normal, all temporary, all not-to-worry-abouts, all should-be-fines. I was about to give up my search and put my anxiety to ease, but that exceptional mother instinct {you know the one} told me something was just not right. Then I ran into a description that seemed to describe my daughter’s spots better; they were called cafe au lait spots, and were usually — but not always — a sign of a very rare, the website assured me, genetic disorder. I remember the word Neurofibromatosis was highlighted in blue, and I hesitated to click on it. After all, the website said “very rare,” right? What were the chances, really, that my daughter would be that one in 3,000 newborns that was born with this disorder? Again, that mom instinct made me click anyway. And oh my gosh… I went from thinking something’s not right to THIS.CAN.NOT.BE.

The website I had landed on described the disorder as one affecting the nervous system, causing benign tumors to form on the nerves anywhere in the body at any time. I remember I felt my heart sink at those words. Did it really say tumors? Anywhere? At any point, as in tomorrow? In a month? When? Did she already have them? How much time did I have? My mind was rushing a thousand miles per hour. Everything was a blur after that. The more I read, the more frightened and confused I became. The website went on to say that these tumors caused complications: seizures, blindness, disfigurement, bone lesions. I was left numb after reading the description. It sounded like the most horrible prognosis I had ever heard about. Did I also mention it said it was incurable?

Yoalli's Story {Neurofibromatosis} - Houston Moms Blog

I decided to take my daughter in for her first month check-up just a few days shy of the date. I expressed my concerns about the “little brown spots” to our doctor, who was wonderful about dismissing them and telling me, “We would just monitor.” She didn’t even mention the possibility of NF. When I confronted her with my research and my findings on Google, she said not to Google anything, and to just wait… Well, thanks. But no thanks.

I left the doctor’s office angry and confused. I remember crying and shaking at the wheel as I drove back. As soon as I got home, I pulled out my cell phone and texted Patty, one of my childhood friends in Mexico whom I knew worked in a women’s hospital as a neonatal doctor. I felt bad asking Patty for medical advice; apart from sharing “likes” on social media, we hadn’t really talked in a long time. But my daughter was worth it. After a few awkward pleasantries, I shared with her my concern about my newborn’s many brown spots. Without hesitation she texted back. “Watch out,” she said. “That could be Neurofibromatosis”

Patty was an angel sent in disguise. To this day, I still thank her often for sharing her wisdom with me and for living up to the definition of a good friend. If it weren’t for her wise guidance, I would probably still have no clue about NF. Patty was the one who recommended we switch pediatricians, then told me to be patient when they sent us to a dermatologist, and finally helped me book an appointment after we were told by genetics that they would be able to assess our daughter in six months. Six months?!?!? I couldn’t live with the anxiety of the unknown. The process had already drug on for two months, and I still didn’t have a diagnosis. I was supposed to go back to work in two weeks, and I had no idea what to do. So I asked Patty to book us an appointment — in Mexico.

Sure enough, in two weeks we were packing our bags and heading ten hours south by car {our daughter didn’t have a passport yet to travel by plane} to reach our destination: Monterrey, my childhood hometown. We met Dr. Marisol Ibarra, the wisest I have yet to see, and the only one who has sat with me for over an hour to answer each one of my questions in detail, and without making me feel stupid for asking them {even though I’m sure a lot of my questions were not very smart that day}. As much as Dr. Ibarra helped me in understanding Neurofibromatosis, that didn’t stop me from feeling so depressed and so helpless about the {now more plausible} possibility of our daughter’s diagnosis. I wanted to cry. I wanted to curl up under her tiny metal desk and not come out. But my mama strength proved true. I held it all together and didn’t let a single tear loose until I got inside my car and started driving. My son and my daughter were fast asleep in the back seat, and I remember driving aimlessly through Monterrey, not knowing which way to go or where to turn to get to where we were staying. And not caring a tiny bit. All I could think about was my little daughter and the life that lay ahead of her.

Was she going to be okay?

Almost two years have passed since that strange trip to Mexico when we first got our “unofficial diagnosis,” and that is the question I ask myself almost every day. It took us another year after we saw Dr. Ibarra to finally get our daughter officially diagnosed through genetics testing here in Houston. Needless to say, I never went back to work. Things did get easier after our official diagnosis; with the support of other NF moms here in Houston, I found an excellent doctor that oversees Yoalli’s health and guides us in the right direction when we meet obstacles. Today Yoalli struggles with some motor issues and has to be completely sedated every three months to undergo MRI tests that monitor a small tumor growing on one of her optic nerves. We have come a long way, but our journey is barely starting. I know that we have a difficult road ahead of us, but I am certain of one thing: I am a stronger mom and braver fighter because of her, and I wouldn’t have it any other way. Yoalli has come to complete our family with the joy and heart-warming smiles only a little girl like her could bring.

I have also found a great support system here in our Houston community: a group of moms that, like me, are searching for a way to help their little ones who also suffer from NF. These powerful moms are changing the way Neurofibromatosis is perceived in our community by raising awareness about this disorder, so our children are accepted and understood just as much as any other little kid. May is NF Awareness Month. Help us spread the word, or better yet – help us find a cure!

Yoalli's Story {Neurofibromatosis} - Houston Moms Blog

And from one mom to another — thank you, from the bottom of my heart, for reading this, for getting to know me and my not-so-ordinary family, and for accepting us for who we are.  


MelyMely M.

Melissa, affectionately known as Mely, is the proud mom of two amazing kids: intrepid soccer-star Samuehl {2009} and sweet little Yoalli {2014}. She and her husband Francisco try to enjoy every second of this crazy ride called parenthood. Together, they enjoy long bike rides with the kids, making family trips to Mexico, and singing at their local church’s choir. When all is quiet at their house {read :: almost never}, Melissa likes to believe she can still remember her old traits of writing and playing the piano. When not, she manages to sing while fixing dinner and scribbling a thought or two in between laundry loads. Her other hobbies include reading and enjoying a good cup of coffee. She is also helping out with the Houston Neurofibromatosis Walk this year, and you can join her here!

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4 Responses to Yoalli’s Story :: A Trip to Mexico, A Rare Diagnosis, & A Mother’s Unconditional Love

  1. Rachel Blanke May 18, 2016 at 7:08 am #

    Beautiful. She is a fighter!

  2. Stephanie Torres May 18, 2016 at 5:18 pm #

    Thank you for writing such a beautiful peice; for spreading NF Awareness; and for having an open and honest heart!
    Yoalli is beautiful!

  3. Sabrina May 18, 2016 at 7:00 pm #

    Thanks for sharing and helping bring awareness to NF!

  4. Melinda C. April 30, 2017 at 11:01 pm #

    I know this is from last year, but I just wanted to say that I have NF too. My 9 month old (most likely) has it as well. As soon as the spots started showing up, I knew. I am in Houston also. I see Dr. Slopis. He is amazing! I hope your daughter is doing well!

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