Rhythms of Grace

Last fall I sat in the waiting room of a doctor’s office holding a copy of my ultrasound. To my left and right were young couples gushing over their little fetuses on the sonogram pictures. I was holding a photo of my fibroid friend who had decided to set up shop in my uterine lining and I was waiting to talk to a doctor about my surgical options. As the mamas-to-be that surrounded me all discussed their current sleep deprivation, I thought of my own. Theirs will end eventually when their sweet little ones begin sleeping through the night and I sat there with the stark realization that I may never have good sleep given Mark’s general disinterest in sleeping. I felt the dread of comparison and anger began to overwhelm me.

Several weeks earlier my mom had been diagnosed with breast cancer, and just a month before that our son received the rare genetic diagnosis. The reality I faced was suffocating and terrifying. My dad passed away when I was three years old leaving my mom alone to raise me by herself. We have a special bond, she’s my person. So two of the most precious people in the world to me were facing big medical challenges and the helplessness was crippling.

I felt like my little medical blip on the radar was just more salt in the wound. I cried that day in the waiting room and felt ridiculous. This was nothing compared to anything else happening to my people. I barely cried since this entire storm of doctor’s appointments began the year before with Mark. And when Mom called me at work to tell me that she had cancer, I was just stunned and dumbfounded. This wasn’t supposed to happen. My dad passing away when I was little was my turn with tragedy, I wasn’t supposed to get another one. And for this to happen to her was such a blow. Mom walked with Dad through his suffering and his eventual passing. In my mind, a cancer diagnosis was the worst thing that could happen to her. Not now. This was not good timing. I suppose there’s never an opportune time for cancer but now seemed worse. I was trying really hard to be brave for my family but this day I cried because I was angry. So incredibly angry about many things, but mostly angry with God.

I’m fully aware that life is not devoid of suffering, and that in suffering we are to draw nearer to the Lord, but that is absolutely not what I felt like doing.

I tried to see the silver lining. I tried to think about how I could use this season to be a blessing to others, but those thoughts and feelings felt fake and forced.

I didn’t want to hear that everything happened for a reason. Or that someone’s neighbor or friend had cancer and they survived or didn’t. And most people didn’t know what to tell me with regard to Mark. It was a rare genetic disease without a name. Nobody’s second cousin had dealt with that.

And I completely know that I am awfulizing, which is when we lament over all of the terrible things happening and then neglect to recognize the positive. I get it. It’s just where I lived for quite some time. How could the train go off the rails this badly?

And then in November, we faced a new, weird challenge. Radon.

At some point that fall, I thought that we should check our house for radon. Seems random I know. My boss had recently discovered that there was a problem in his home so I thought it would probably be wise to investigate the possibility in ours. After sending away a test we purchased from Amazon, we received the results. Our radon level was 413. As a point of reference anything above two is bad. Two. Not 200, two. The chart on the results only went up to 100, stating that our risk of lung cancer was exponentially higher if we had anything up to 100. Our level was 413! Thinking it was a mistake, I called the First Alert company. Nope. It was so high, they tested it several more times to be sure.

Evidently, our house was built on a large bed of shale, which is essentially uranium and the source of radon. Super. So just like any other problem, I dove in head first to figure out what person we could get to our house ASAP to fix it. However, I quickly learned that there are only a handful of people in the state that mitigate radon, and the person who actually answered his phone couldn’t come to our house until the end of the year but did manage to share that in 25 years of doing this, he had only ever had one other home as bad as ours. Well, you know, we go big or go home!

So if we’re keeping track for awfulizing purposes, we had the following going on here:

  • Son with rare genetic condition with no name or prognosis with new fear of seizures
  • Mom with aggressive form of breast cancer
  • Imminent surgery for me
  • Home built on natural toxic waste dump, with our lung cancer risk being the same as if we all smoked a pack of cigarettes every day

The Nathaniel Ratecliff and the Night Sweats song called S.O.B. played on the radio the morning after our radon problem surfaced. I’m not much of a drinker, and I limit my use of foul language but I heard this song and just starting laughing, so hard that I started crying. I drove to work, cranked the song, and just cried the ugly cry. It was my white flag moment. My “I give, you win”.

Never was it more abundantly clear that I was not in control than at the end of last fall. Control is such a continual struggle for me.

I didn’t even know how to begin unpacking the baggage I was now dragging around. Feeling powerless, many nights I would sit with Mark as we “watched” the music. I would play his songs and he happily sat on my lap, staring at the screen, as I wrote blog posts I never shared. We also watched the videos of the SCN2a children. Mark loved the Rachel Platten songs that accompanied them, and they became some of our theme songs. And slowly over time, I began to realize that my job on this earth is not to solve the problems, any of them really. Instead, it’s to join alongside in the trench. That’s my job. Be there. Be there for the people I love and to teach my children to do the same.

And so I went to Mom’s first chemo. I rode along to Hopkins for the second opinion. And I helped Mom pick out her wig when her hair fell out.

I drove Mark to his therapy appointments, held him during medical procedures and cheered like crazy when he finally figured out something that had been challenging him for months.

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I lived in Jillian’s world of anxiety, trying to make her laugh in a sea of scary things.

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And I threw myself into fundraising events for SCN2a research.

We marched on, we showed up and held each other’s hands. Things, of course, aren’t perfect now. Mom still has a port in her chest for one more treatment. Mark is three and a half and just figured out how to clap. And our basement is torn apart because of the work that Ike performed over the past year to thankfully remedy our “little” radon catastrophe. Yet despite the slow pace of our progress, God has grown me, molded me and shaped me through this season of uncertainty. My anger has dissolved into thankfulness for His grace and goodness in this tough season, and for never abandoning me even when I abandoned Him.

I recently ran across this version of Matthew 11:28-30 (MSG)

28-30 “Are you tired? Worn out? Burned out on religion? Come to me. Get away with me and you’ll recover your life. I’ll show you how to take a real rest. Walk with me and work with me—watch how I do it. Learn the unforced rhythms of grace. I won’t lay anything heavy or ill-fitting on you. Keep company with me and you’ll learn to live freely and lightly.”

 May we continue to hold each other’s hands, as we live freely, and lightly and learn the unforced rhythms of grace.

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Finding Light and Hope in the Windy City

Word CloudThe majority of the time I’ve used this blog as a therapeutic outlet for the happenings of our family’s life and a place to share the things on my heart. And today I wanted to do something a little different and write about a conference that will generate ripples of impact for years to come.

This past weekend we traveled to Chicago for the first ever, FamilieSCN2a Foundation Family and Professional conference. Medical researchers, professionals, scientists and neurologists came together with 25 families impacted by the SCN2a gene mutation to share knowledge and experience that will open doors for further discovery.

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Among the attendees was a pediatric neurologist, Ingo Helbig of CHOP (Children’s Hospital of Philadelphia) who has dedicated his career to studying epilepsy genetics, and writes a blog called Beyond the Ion Channel

In response to attending our conference he wrote a blog post during his flight home from Chicago which summarized the five things he learned during the weekend.

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This inspired me to write about the five things that I learned during my time in Chicago. Though the science was incredibly fascinating, what impacted me most was the power of the families.

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Here’s my list:

  1. “Friending” my Facebook “friends”

Our first night of the conference was spent manning the early registration table helping families check in, giving out general information and primarily putting faces to names. The first parent that walked off the elevator I recognized immediately and was thrilled that she had traveled from Canada to be here. Remembering a recent post about her son being seizure free for 100 days I congratulated her on their victory. She went on to tell me that prior to this seizure free stint her son’s medical team told her to place him on palliative care because they had reached the end of the road with seizure drugs, nothing was working and her son was not doing well. She chose to bring him home to die and then decided to try just one more drug, a drug that they had tried when he was younger, and even though it previously failed him, this time it worked. Her son has been free from seizures for four months, and a party was planned when she returned from the conference.

This experience of storytelling repeated itself each time we spoke with a new family. We learned their story, and had tremendous respect for their dedication and love for their children.  Since becoming part of the SCN2a group on Facebook I have probably gained 40 or 50 “friends”. I comment and like their posts, but none of it was ever really real, until this weekend. We met with, gave high fives, hugged and held other children with SCN2a. We became friends with our “friends”.

 

  1. We’re not out of the woods

I’ve written about my deepest fear before, but it faced me head on during the conference. I connected with three parents whose children fell in the “later onset” group who were developmentally delayed, had autism diagnoses, and then one day seizures started. They lost the progress they had made and were forced to relearn skills, again and again. The maddening cycle of trialing meds began and then the cascade of medical concerns surfaced. Some of the kids in this category have ended up on feeding tubes, and deal with a variety of concerns including lowered immunity. While this could send me to a very dark place, living in fear of seizures, and Mark spiraling backwards, I can’t go there, it won’t benefit Mark, or me. Knowing that someday we may face these challenges, I do take comfort in knowing that incredibly wise, inspiring parents have walked this path before us and are there to hold our hands through possibly getting a g-tube, trying the ketogenic diet or trialing AEDs (antiepileptic drugs).

 

  1. It’s not black and white

Throughout the conference I had a running list in my head of parents I wanted to connect with for one reason or another. And one of them was a father who uses a biomed approach (nutrition and supplements) with his two children who share the exact same SCN2a gene mutation, meaning they have the same variant, which gives the specific location/function on the gene. And even more baffling, the father has the exact gene mutation as well but is completely unaffected. His daughter suffers from severe, debilitating epilepsy and his son has severe autism. The exact same mutation, with no impact on the father, and profoundly different impacts on his two children. Whatever I thought I knew about SCN2a I felt like I needed to throw out the window. The “genetic shapeshifter” as SCN2a has been called lives up to it’s name in this one family. Yet even more compelling was the momentum and drive this father has to continue to push forward after being on this puzzling journey for 13 years. Seeing the love in his eyes for his children was so encouraging and gave us fuel to keep turning over the stones.

 

  1. Departure from the hammer approach

One of the things I heard parents talk about repeatedly was what drugs have worked, which haven’t, and the frustrating cycle of treating the side effects of the drugs with other drugs. One of my favorite presentations, that Ingo also mentions in his more scientific and sophisticated take on the conference, was by Dr. Anne Berg, an epidemiologist, who has spent 25 years researching pediatric epilepsy and cognitive consequences. She included an illustration demonstrating the current medical approach showing a hammer being used for the purpose of driving nails, screws and other metal fasteners. Obviously the hammer will only work for the nail, and for other materials things like screwdrivers are more appropriate. Our current approach to addressing problems like seizures, not dissimilar to the hammer illustration, is to begin throwing medications at it with no real rhyme or reason, just what worked for some kids. The future of treatment will rely heavily on personalized medicine, and understanding what specific approach will work with each child and their unique mutation and presentation. She referenced pediatric cancer, and how each child who is diagnosed is automatically put into a database, and enrolled in a research study providing cutting edge treatment. The parallel concluded with survival rates near 90%. This is possible and can happen with SCN2a.

 

  1. There is HOPE

Friends, we are in an incredible age of discovery. Five years ago, Whole Exome Sequencing (the testing that helped us discover Mark’s problem) was not readily available, extremely expensive and not routinely ordered. Now, this testing is done way more frequently, and is mostly covered by insurance. SCN2a is part of more epilepsy blood work panels run by neurologists attempting to treat children with seizures. And our hope is that by educating our community on the prevalence and significance of the SCN2a gene mutation, and the diverse presentation of phenotypes (how the gene mutation presents in children, i.e. autism, epilepsy, intellectual deficit, movement disorders and schizophrenia), more genetic counselors, neurologists and physicians will consider ordering genetic testing, even in cases of autism with no seizures.

But even more than that, there is incredible momentum in the scientific community with multiple labs, using a variety of approaches to creating different cell models, mouse models and trialing drugs to determine specific treatments. And I think perhaps the greatest take-away from this weekend was the intelligence that the SCN2a families themselves possess. During each Q&A session, we wrote questions on pieces of paper and passed them to the front for the speakers to answer. The piles of notes contained so many incredibly complex questions that brought about such meaningful discussion. It was during these sessions that the information became relevant to our kids, and demonstrated that we are a serious group full of tenacity. Together with the brilliance of researchers, we WILL find a cure.
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This post was written for the families who attended, those that could not, and our village of supporters who consistently back us by attending our fundraisers, sharing our posts, and for loving us where we are in this journey, on the hopeful days as well as the dark.

Thank you for helping us let the light in and keep the hope alive.

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Our Village

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Last night I stood in my high school’s auditorium watching as people began to fill the seats in anticipation of Godspell, an encore show that Boonsboro High School Drama was doing in honor of our family, to raise funds for FamilieSCN2a Foundation. I could feel the buzz in the room, see my friends and family who came to support us, and as I glanced up at the screen that showed a picture of me holding my little boy, I was flooded with the memories of events that brought us to this place, where we have been so cared for and loved.

Mommy & Mark on the screen

I thought back to the moment when I was sitting in a waiting room of a hospital in Baltimore holding Mark as he clutched his blanket, receiving the results of his ABR testing that measured his ability to process sound. We learned that he could hear, and as odd as it may sound, I was disappointed. I had prayed earlier that morning that they would tell us that he was deaf, and that it would be a less painful explanation for why he ignored us. Then I remembered the office visit where we were officially told he had autism. And finally the memory of being handed the SCN2a diagnosis, learning that autistic features are just one part of a larger, rare disease. The weight and gravity of this pulled me into a very dark place where I was angry and wondered what I had done to deserve this path in life.  My sweet, beautiful boy who we named after both of our fathers faced a life of intellectual deficit, lifelong autism, a variety of puzzling medical problems, and the propensity for seizures, which in and of itself could lead to a number of other catastrophic complications, including death. I’ve typed and retyped these lines several times and settled with what I included because there are no words to describe the loneliness and sadness we felt.

 

For those of you familiar with our story, you know that we quickly became connected with the FamilieSCN2a Foundation, found motivation to fight for a cure and the support we needed to dig ourselves out of our dark place. Our connection with the other families impacted by SCN2a lead us to our first large scale fundraiser, held last weekend. 500 people came to Middletown Community Park to show their love and support, and as the Color Dash kicked off, I was walking alongside Mark’s physical therapist, my children and our best friends, and I just began to cry because I remembered all of those lonely medical trips where we learned more and more troubling news, and I would have never imagined that my community would rally around us the way that they have. As we headed past each color station, I saw friends from high school band, family, co workers and parents of children from daycare, and I just felt so embraced. I knew that this day would be a day to remember forever and I was incredibly grateful.

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Then on Tuesday night, I sat in my office at work waiting out the rain at the end of a long day and I received the following message from Mr. Bair:

Michael J. Bair

Angie…on April 28, 29, and 30th, BHS Drama performed “Godspell” to packed houses.  The play was such a success that folks have begged me for an encore.  I said that I would only do one if I could find a cause to support.  It feels like greed any other way.  I know we can pack the house again, and we will just be sucking cash from the same folks.  Instead, I would like perform the show as a fundraiser for your charity.  If you know of someone who needs immediate financial help with SCN2A, I could just as easily do that.  Regardless, I am on a time crunch, and if nothing else, we would like Ike and you to be our guest of honors, and perhaps, you could come up and share a little about the condition.  That’s not mandatory.  Just let me know ASAP please.  I must advertise immediately.  Blessings!  MjB

 

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I was stunned, touched and overwhelmed. I didn’t think that anything could top the community love I felt at the Color Dash, but having a drama production at my Alma mater in honor of us and to raise money for the foundation, took the cake. The event was shared over 100 times on Facebook, the auditorium was packed, and about $2,000 was raised. But even greater than the donation that we are so grateful to receive, was how Mr. Bair and the cast embraced us and made us feel so incredibly loved. Godspell was quite the fitting show for what transpired last night. They showed us the love of Christ.

 “Truly I tell you, whatever you did for one of the least of these brothers and sisters of mine, you did for me”. Matthew 25:40

I will always cherish the opportunity we had to pray with the cast before the show, and to share our story with a room full of talented students who were willing to do a production just one more time for the purpose of finding a cure for our son and other children who suffer from SCN2a. We know how much these productions suck the life of out of the cast, and understand how big of a deal it was for them to do it once more. And I will never forget receiving so many genuine hugs from the cast at the end of the show.

I love what they did, and how they did it. I hope that each and every one of them understands what a seminal moment last night was for us, and that they now have a place in our story.

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As I write this, Mark is sitting next to me on the floor humming as he flips through the pages of his books, and I am envisioning the day that he will be able to read the words on the pages out loud, and we can savor the beauty of a voice that a whole village had a hand in bringing to life.

Just Love Him

 

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In the beginning of our journey when Mark’s medical concerns and developmental delays were unfolding Ike and I said that our mission was to do everything in our power to give him the best life possible while accepting him for who he is, and loving him regardless of how different he may be from what we expected. Sometimes, I lose sight of that.

Recently, I went to a kid’s consignment sale and as I stood in front of the vast selection of infant toys, I thought “Mark would be in heaven.” The bold colors, the buttons, the lights and sounds! And then a mom grabbed her toddler’s hand, who looked to be about three, and I could hear her grumble “you don’t want those toys, those are for babies.” And my heart sunk. It’s funny how certain things will send me over the edge to face my feelings. Each time I read the words “don’t blink, they grow up so fast”, I feel resentful and bitter, because I have an almost three old who is just now figuring out his infant toys. I left the sale, sat in my car, and feverishly typed out a grumpy blog post in the notes section on my phone. It went something like this…

April is Autism Awareness Month. Meh. A whole month dedicated to reminding me of my reality. One trip to the barber, or attending our first IEP meeting is enough to make me aware of autism. An article about wandering/escaping was recently shared on Facebook, and it left me feeling this deep sense of worry, and the wandering prevention kit that I subsequently ordered is now shoved deep within my closet. I don’t want to “light it up blue”.  I want to make it go away. Dealing with the daily battles that routinely crop up leaves little enthusiasm for us to spread awareness and celebrate difference. Though Mark makes progress, sometimes our little triumphs are buried among the discouraging reminders of the differences that exist between Mark and other children.

And on the negative post went.

Most of the time when I write something, I scan over it several times, hit publish and wait for my mom to text me my typos. 🙂 This time, I let Ike read it first. He wanted me to make sure that anyone who read it understood that despite my recent negativity, things are OK in our house. We are struggling, but respectively, struggling well. We try to take our life one day at a time but sometimes certain little moments make us zoom out and get a quick glimpse of the giant mountains before us and it leaves me rattled.

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This is a recent picture. There are still snowmen on my mantle. No judgement. 😉

And then there are moments like this morning when I tried to give Mark a new medication. I was told that the taste was awful and we would have difficulty getting him to take it. Two of Mark’s doctors have been collaborating trying to treat his SIBO, small intestinal bacterial overgrowth, so an antibiotic was prescribed, with the anecdotal hope that it will also treat some of the autistic symptoms he experiences. Within seconds of giving it to him he projectile vomited. I felt defeated. In attempt to disinfect the area, I sprayed the spot with cleaner and walked into the kitchen. Before I knew it, Mark had wandered over, slipped and landed on his back in the cleaning solution on the floor and began to cry. I scooped him up in my arms, my eyes welled up with tears and I felt like I had failed him.

As I cleaned up and thought about my next move with Mark’s medication, I starting anxiously thinking about how I’m going to have to fight both of Mark’s insurance companies to cover the medication that I originally wanted for him that tastes much better but costs thousands. And then Mark, who had recovered well from his fall, walked over, grabbed my hand, put it on his head, and leaned into my legs and smiled. I took a deep breath, inhaled his delicious toddler Cheerio smell, and thought, “just love him.”

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Sometimes I like to hold Mark and listen to the Coldplay song, “Fix You”, and imagine the day where Mark’s autism has faded, the looming dark cloud of his genetic mutation is gone and the person I’ve been missing since his birth appears. I know he’s in there. Locked in tight with his words. And though it’s hard to miss something or someone you’ve never had, I miss him so much it hurts.

It is so difficult to strike the balance of cherishing and loving Mark as he is and then fighting so hard to give him a better life, but part of that better life is having a mama who is capable of rolling with the punches and dusting herself off. I could spend energy wishing things were different, harboring bitterness about how hard everything is for him, but where does that leave me?  So I will vow to love my son as he is, not lament over what he’s not, and embrace the freedom that there is in accepting the gift of our sweet Mighty boy.

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Love bears all things, believes all things, hopes all things, endures all things.    1 Corinthians 13:7

 

Cure for What?

I was standing in a gas station parking lot in late 2014 when I received a phone call from the Neurodevelopment Clinic at Kennedy Krieger. The doctor who recently evaluated Mark was calling to inform me of the next battery of tests, but it was her parting lines that left me stunned. She said that she was very concerned about Mark, and that autism, the thing I feared most, was the least of our worries. I didn’t even have a chance to wrap my head around the “least of our worries” and now we were left to imagine something worse.  An MRI and EEG were to be done, along with with more blood work, and a referral to Neurogenetics, a division at KKI that would do more extensive testing to help us search for an answer.

The night of Mark's overnight EEG

The night of Mark’s overnight EEG

While we waited for the genetics appointment, Mark received his Autism Spectrum Disorder (ASD) diagnosis that we assumed he would receive. This diagnosis, however, never seemed to fit perfectly. Mark had some autistic tendencies but had a variety of other challenges including hypotonia, significant struggles with with gross and fine motor skills, eating and digestive problems, and faced a number of challenges with his ears, having surgery when he turned one to have his adenoids removed and tubes placed. To no avail, I tried desperately to put all of these strange pieces together.

Smiling during an evaluation

Smiling during an evaluation

The Neurogenetics team recommended that we do Whole Exome Sequencing to look at Mark’s DNA to determine what potentially was happening. Blood work was done that spring and on August 11th I received a phone call that the results were in and they wanted to go over them right away. Sitting at my desk with my pen in hand and a notepad I feverishly scribbled what I could understand. I’ll never forget Dr. Naidu’s voice coming on the call saying “S as in Sam, C as in Cat, N as in Nancy, the number 2, and A as in apple.” Our genetic counselor, Sonal, explained that Mark had a missense mutation on the SCN2a gene, which presented a problem in the sodium channel that played a large role in brain development. Words used included “intellectual disability”, “cognitive deficit”, “ceiling of capabilities”, and a very serious possibility of epileptic seizures that could pose a variety of problems including regression of skills, difficulty breathing and eating independently, along with a host of cascading problems which could result if seizures commenced. 

Notes I took during the genetics call

Notes I took during the genetics call

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What You Need to Know About SCN2a

I turned off my computer, left work, and headed for the car. I went to my parents house, shared the news with Ike on the way and then sat motionless in front of a laptop on the back porch afraid to Google: SCN2a. Our genetic counselor had told me that there was a Facebook group in existence maintained by parents of other children with the mutation. There was also a website, www.scn2a.org.

We weren’t alone. In fact, that afternoon, after being a recluse from Facebook for several months, I logged on and found the FamilieSCN2a group. I immediately connected with the group administrators and learned that Leah, the president of the board, and founder of the group, lived 20 minutes away. After several phone calls and many Facebook messages I began to get to know some of the other families in this group. I became acquainted with a fierce, intelligent group of parents determined to find a cure for this gene mutation that robs their children of so much.

Ben (Leah's son) meeting Mark for the first time

Ben (Leah’s son) meeting Mark for the first time

I write all of this because after my most recent blog post, Hope and a Future, I received a number of emails, texts and Facebook messages from people who had read my blog and felt some contention about what I had written. Philosophically, there remains a tug-o-war between accepting neurodiversity, and fighting it, opting for “normal”.  As a parent of a child with a disability, I constantly try to balance embracing and loving him for who he is and where he is, with pushing for where he could be, fighting for his potential. I write, fund raise and research, not to fix my son, but to fix the gene mutation that may potentially rob him of a future.

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There are approximately 200 cases of SCN2a gene mutations worldwide, with 120 families connected through our group on Facebook. With the exception of Mark, and a handful of other children, most kids in the group experience devastating seizures, for some, we’re talking thousands per day, and a few of these sweet babies were seizing in utero and upon their birth. Many children in the group have cerebral palsy diagnoses, ASD, ADHD, developmental delays, intellectual disability, movement and speech disorders, GI issues along with vision impairment. Many have feeding tubes, frequent hospital stays, some are in wheelchairs and a few are unable to breathe on their own. Sadly, we have already lost five children to the catastrophic effects of the SCN2a gene mutation. So when I talk about my intention of finding a cure, this is what I want to cure. For my son, and all of the other children suffering from the effects of SCN2a. I love Mark the way he is, I really do, and I am very thankful for how healthy he has been given how he could be, but I want to see him make it through childhood, and would love to not live in fear of seizures and the resulting deleterious effects. Please join me in praying and fundraising for a cure so that Mark, and children around the world have a bright future free of seizures and related disorders.

To see the beautiful faces of children impacted by SCN2a please watch this video

 

Many people have asked how they can help.

There are three great ways to give!

If you shop on Amazon, click on the image below, search for FamilieSCN2a. Once selected, Amazon will donate 0.5% of your purchase price to the FamilieSCN2a Foundation each time you shop.

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An anonymous donor has offered to match all donations up to $10,000 starting February 1st through April 30, 2016.

PLEASE help us take advantage of this excellent opportunity to double our fundraising efforts. We have some promising research projects in the pipeline that will need funding very soon. Help us reach our goal of awarding the first FamilieSCN2a Research Grant of $50,000 by July 1st! Click on the image below for more info.1430

 

 

Click on the image below to join us on April 30th for the Color Dash in Middletown, MD!

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