Ending NF: What does it mean?

I was honored to be invited to submit an article for the Spring 2017 edition of Inspire Magazine from The Tumour Foundation of BC (formerly known as BCNF) about what Ending NF means to me. You can find the magazine here: !NSP!RE

Ending NF: What does it mean?

By Connie Sorman

When I stop to think about what it would mean to End NF, the thoughts get tangled as they intertwine in their complexities.  Does Ending NF mean that there would no longer be people diagnosed and living with the disorder? Does it simply mean that there would be an array of effective and safe treatments, which would make the many different manifestations of NF manageable? Maybe the meaning would encompass the ability to stop tumors from growing in the first place—genetic modification. Or perhaps, Ending NF would be ending the stigma and the lack of knowledge surrounding the disorder, making NF as known in the public eye as MS or MD or Diabetes and those living with NF would feel valued and validated by society. It would mean that nobody lives with NF in isolation and that there would be many choices for well-informed physicians to treat NF patients and approved treatments to provide to them.

I don’t know what End NF means to anyone else, but I’m not very literal in my interpretation. What I have chosen to fight for, as the mother of a child, now grown to be a young man, is to end stigma, increase knowledge, educate others, spread awareness and provide support to those living with the disorder. In addition, I advocate for research funding, I do what I can to raise money on my own and I volunteer.  While I hope that one day there will no longer be people living with NF, I am realistic enough to understand that this is unlikely to happen in my son’s lifetime. Having said that, it thrills me to know how far the research has come in the 19 years since his diagnosis.  The first time I heard the name, Neurofibromatosis, my son was an infant, just 3 months old. At that time, not only were there no treatments, but there were also no clinical trials yet identified for potential treatments.  I remember hearing of the very first trial that showed promise in mouse models and I dug up whatever I could find to fuel my hope that learning disabilities, my son’s most prevalent manifestation at that time, could actually be reversed.  He was too young to participate in the trial at first, but as soon as he was able, he did.  Although the research is ongoing for that particular study after 10 years, I still have optimism about it and it holds a special place for us because he was a part of its history.

Today there are many studies for a variety of different symptoms related to the three types of NF. Scientists are working together for the first time in NF history through clinical consortium and Synodos efforts to collaborate on interdisciplinary, multi-institutional, translational research. There are drugs showing significant tumor shrinkage and are very promising to be offered as approved clinical treatments in NF1 in the foreseeable future.  There are medicines that are reversing hearing loss in NF2 patients.  We have the science, the researchers, consistent funding, passion, enthusiasm and incredible hope among us.  We have the ability to End NF and we will. The progress is quite remarkable and for the first time since 1882 when Friederich Daniel Von Recklinghausen recognized NF by describing two cases of multiple neurofibromatosis, we are on the brink of Ending NF in the very real sense that will most directly impact those who are living with it every single day.

What are you doing to End NF? Here are some suggestions:

·      Join the NF Registry! Go to www.NFregistry.org and register every member of your family who has been diagnosed with NF.

·      Volunteer at a local event, symposium, NF clinic or create your own fundraising event. Go to www.ctf.org to find resources, ideas and opportunities.

·      Spread Awareness! Wear an NF shirt or wrist band, ask your government to recognize May as NF Awareness Month, get buildings, monuments or bridges to “Shine a Light” on NF in May.

Gone

Gone worry, anxiety, fear’s ache.

Gone healing’s hope and triumph’s take.

Gone past struggles, deceptive pain.

Gone future goals and dreams unattained.

Gone parents' dreams for their son.

Gone conclusion, ambitions undone.

Gone big brother to protect and defend.

Gone uncle, cousin, grandson, nephew, friend.

Gone potential white walk down the aisle,

New daughter to love, unborn grandchild.

Gone wholeness of a heart now forever blue.

Gone every certainty understood to be true.

Gone laughter, humor, devilish smile.

Gone ours too, for a long while.

Gone suffering, gone affliction, gone anguish, gone fight.

Gone promise, gone aspiration, gone existence, gone light.

Gone days without tears.

Gone

Gone

Gone…

Because you are gone…

And we are still here.

Brandon’s Mom

Connie Sorman

In memory: Brandon Roat, 2.2.1992 ~ 2.13.2017

Before There Was You

There are many twists and turns in life; aspects which seemingly have nothing what-so-ever to do with who we are in every other regard. The truth is that all parts of our lives are what create our identities and all experiences shape us. If someone had told me, at 25, that addiction would one day shatter my world, I wouldn't have believed them. I'd have stared at them in horror.  If they would have told me that a genetic disorder, which I couldn't even pronounce, would become a focus in my life, I'm not sure I would have fully understood what that meant at that moment in time.

When I became a brand new mother at the age of 26, life, as I'd known it previously, was no longer. It was a wonderful new normal to be a mother and have a family and it thoroughly changed me for the better.  The maternal instinct was strong within me throughout my life and this one event completed me. I was blessed to be given this precious gift of motherhood subsequently, three more times.

When they place that newborn on your chest in the delivery room, they don't tell you about all of the possibilities to come. They don't warn you about heartache. I suppose that would not be the time and place for that. Truthfully, nobody ever prepares you for the worst; those are just events that happen to us and we are forced to face them, unprepared, when they do.

As most mothers do, I had hopes and dreams for my first-born child, for all of my children, but different hopes and different dreams for each of them. This child would go far in life and he would conquer the world with his gifts and talents!  Turns out that his path was different than what I'd imagined it would be. Coming to terms with that and fully accepting it will mean that I have another new normal to embrace...that, for me, is the most difficult part of grief of all.

I wrote this poem for my first son and for all of the parents (most especially the mothers), who are forced to live with a new normal that they were not prepared for in advance. If you replace some of the words, the poem is relevant to many situations that did not turn out the way you'd expected them to. I've faced this reality twice, with both of my sons; one with addiction and the other with neurofibromatosis.

Before there was you,

I never knew,

That love could be so selfless and so pure.

The fierce protector inside me; knowing no bounds for the lengths I could go to keep you safe.

That being your Mommy would give me infinite purpose; nothing I'd been, nothing I'd done before, had any meaning at all.

The capacity in my heart to treasure another person's life, above all others, unconditionally.

Before there was you,

I never knew,

That pride could taste of the sweetest fruit, yet prevent me the ability to swallow.

That my breath could be stolen by your every accomplishment and the wind knocked from my sails by your every defeat.

That my melting point consisted of your smile and your frown equally, yet without similarity.

Before there was you,

I never knew,

How intertwined joy and sorrow could be.

That my love would not be enough to save you from your demons.

That immense promise lay in your courage and complete despair in your choices.

That my ability to hold tenaciously to hope would arise from you losing yours.

That I could want more for you than you seemed to want for yourself.

Before there was you,

I never knew,

That someone who was so deeply loved could be devoured by perceived pain.

That your mind could be ravaged so completely by a substance that you could no longer recall my love.

Before there was you,

I never knew,

The agony in helplessness and the conflict of being unable to shield my child.

The many sleepless nights of unimagined fear; unaware if you were cold, hungry, safe or…alive.

The anguish and heartbreak that comes with having to refuse your child's appeals.

The compelling necessity for belief in a higher power.

I never knew,

That I could survive the horror of your addiction, when you would not.

That the gaping hole, left by losing you, would prevent me from ever again living life like the one I knew,

Before there was you.

~Connie Sorman

Dedicated to my B-loved son, Brandon, 2/2/1992 to 2/13/2017

Brandon Stephen Roat, Obituary and Eulogy: http://nfsaid.blogspot.com/p/brandon-stephen-roats-memory-page.html