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Anthony is On the Move for Nevus Outreach

Rare can be defined as: 

a.) Infrequent, not occurring very often.

b.) Not found in large numbers.

c.) Unusually good, remarkable.

We will ALWAYS choose C.

 

For those of you who don't know us or our story, my name is Jenna VanDerzee and my husband is Anthony. Our pride and joy, rare baby boy, is Anthony Jr. Anthony has a very rare skin condition called Congenital Melanocytic Nevus (CMN). Anthony was diagnosed at birth, but there were no previous idicators of CMN. On the day he was born, a day where parents should feel nothing but joy, our intial emotions were fear and uncertainty. 

The time leading up to becoming parents was so exciting and a little nerve wracking. Anthony and I were beyond thrilled when we found out I was pregnant. We decided we did not want to find out the gender of Baby V. I had an easy pregnancy with zero complications and we could not wait to meet our baby!  On September 4, 2017 my water broke around 11 o’clock in the morning. Shortly after, the two first time parents packed the car with all the bags and pillows eager to meet our little one and find out if Baby V was a boy or a girl. Baby V did not come as soon as we expected. 15 hours later after an emergency C section on September 5, we met our greatest blessing, Anthony Frank Vanderzee Jr. Anthony was the first to tell me that it was a boy, but amongst his excitement to announce, it was a boy, came some silence. They briefly showed me my son only for a nurse to come over and tell me that he had to go to the NICU due to “spots” all over his skin. No one in the delivery room was sure as to what our son had, therefore no one could give us any answers as to what was going on.

 

We thought we were prepared for everything, but we were not prepared for this. As our son was taken to the NICU, I had to wait in recovery for what felt like a month. My husband Anthony went with him hoping for answers. The NICU nurses had called the neonatal Dr. in from CHOP to inform my husband as to what was happening. All the while some very scary possibilities of what the future held were also thrown our way. There were a lot of “what ifs” and that new parenthood joy turned quickly to fear and anxiety for the future. We looked at our sweet boy and couldn’t help but wonder Why us? Why him? The doctor told us what Little Anthony’s skin condition was called and wrote it down on a post it, as I read the words Congenital Melanocytic Nevus I cried and cried.  We didn’t enjoy those new parent moments, we spent so much time googling and researching, and panicking and going to doctors. We had so many questions and had so much to educate ourselves on. All things aside, we had a beautiful baby boy who we would do absolutely anything for.

Little Anthony has a very large Nevus “birthmark” on his back, and is covered from head to toe in smaller “birthmarks" called satellites. Due to these birth marks he has a higher risk of melanoma and we have to be extra careful of his skin in the sun. He has no sweat glands where his nevus is so he becomes hot faster than most of us. As I mentioned, this skin condition is rare, but having a giant Congenital Melanocytic Nevus is so rare it occurs in 1 in 500,000 people. Due to the fact that it is so rare it was very difficult for us as it has been challenging to find people to talk to about it, and most doctors we’ve encountered have never seen it.

Congenital Melanocytic Nevus(CMN) is not genetic. There is no way it can be detected, and there is nothing you can do to prevent it. Aside from CMN There are many other complications that can come with it such as Neurocutaneous Melanocytosis (NCM), seizures, and hydrocephalus. Fortunately,  Anthony Jr had two MRIs to test for NCM and it was ruled out. Not all children are as lucky and their families are facing challenges far more difficult than us.

 

Our son is that ONE in 500,000 who has Giant Congenital Melanocytic Nevus. We will spend our lives not only being his advocates, his voice, his protectors and his support system, but we also vow to spread awareness. Our hope is it will prevent a needless stare or a rude comment. With this, we then have accomplished our goal. We want to make you aware of our special boy and the other children/adults in the world with Congenital Melanocytic Nevus. Aside from the diagnosis of CMN, Anthony Jr. is a happy, healthy, smart, and handsome boy.  We are beyond blessed to be his parents. Because of him we have become more appreciative of the life we have been given and have learned not to take anything for granted.

 

Last year we decided to take action to spread awareness and raise money. We were able to raise over 22,000 dollars. That money is currently being used to fund several Nevus research projects. We were simply blown away with all of the love and support from our race last year we decided to make it an annual thing. 

 

100% of the money from this race and donations will go entirely to Nevus Outreach. Nevus Outreach is a nonprofit organization. The money raised will be used to fund research in finding a cure for Congenital Melanocytic Nevus as well to help fund the biennial Nevus Outreach Conference. The Nevus Outreach conferece is held every other year. It is a time when people with a nevus and their family members, psychosocial experts and medical professionals from around the world come together to meet.These meetings offer a chance for people to forge relationships and get current medical information. Nevus Outreach has played a large role in our lives since Anthony was born. It not only serves as a support system for many families but also vows to raise awareness and continues to make tremendous efforts to find treatment and a cure for CMN. 

 

We thank you for taking the time to read our story and hope you can join us on September 15, 2019. 

 

 

 

 

Event Details

On Sunday, September 15, 2019 the second annual "Anthony is on the Move for Nevus Outreach" Certified 5K and 1 Mile Fun will take place. 

The race will take place at Cooper River Park, located on North Park Drive in Pennsauken, NJ.

Registration and race pickup will begin at 8:15 and the race will begin at 9:30. Packet Pickup and registration will be located at the field next to the playground and LaScalas. 

For any further questions please contact Jenna Van Derzee at nevusfamily9517@gmail.com

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Our Newest Participants

  • EV Eddie Vant III $35.00 raised
  • TG Tricia Gardner
  • RN Rich Nelms
  • DT Dana Taulane
  • KM Keri Markowski
  • CC Claire Caltabiano
  • HP Haley Philpott
  • MP Marianne Pantisano
  • RV Rosalie Vanderzee
  • RV Russell Van Derzee
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