Tag Archive | Giant congenital melanocytic nevus

From hiding to Hollywood!

Mermaid’s disease has introduced us to all forms of Nevus, where occasionally we shed tears over the stories and difficulties everyone faces, we also get to celebrate.

Meet Marika Nagy from Manchester, a fellow member of one our support groups who got her chance to tell her story.

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My favorite line…

“My birthmarks make me special. The world would be a very boring place if we all looked the same.”

With Marika’s blessing we share her story, she is such an inspiration to all of us!

Click below to read her story on the daily mail!

http://www.dailymail.co.uk/femail/article-3809507/Girl-coverered-birthmarks-bullied-looking-like-cow.html

Marika – we look forward to seeing you on the big screen!

Thanks for walking with us today!

Mermaid’s Mommy

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Lean toward happy…

Those of you that know me personally, know that I am a huge baseball fan. Where my team’s season is about over with basically no shot in the series I will still be glued to what’s happening all October. I recently read an article rooting against the Cubs to take the World Series and before everyone in Chicago gets upset at me for agreeing, let me tell you why. You see, the Cubs haven’t won a world series since 1908. Yes, they deserve their moment in the limelight but if they win, we lose one of the last connections to old-time baseball. To me, the time of the greats. The time where players were heroes, before other sports dominated the world and baseball was the leader. If they win, what will they grumble about for the next 100 years? I love this writers perspective, but win or lose, I love the sport.

There is a special little boy named Dylan who also has a love of the sport and right now, he needs you to help him hit a home run this October. October 3rd Dylan will be going in for his 27th… yes, you read that right, TWENTY SEVENTH surgery.

Dylan was born with Giant Melanocytic Nevus. A rare condition found in 1% of infants. Additionally he has Neurocutaneous Melanocytosis (NCM) which means he has it in his brain and spine as well.

Dylan’s form of Nevus runs the risk of melanoma and to help prevent that he will yet again, be undergoing another surgery.

In the photo on the right, Dylan is holding a picture of his friend Christian wrapped in the Lord’s arms. Christian and Dylan became friends when Christian was only 6 months old. This week marks Christian’s 2 year Angelversary. Christian lost his battle with Melanoma that was present in his Nevus at 19 months of age. I speak frequently about the potential side effects and our fears, our family has also endured the loss of a friend to Melanoma but Dylan’s fight reminds us all too much of those painful realities.

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(Dylan and Christian a few short months before Christian’s passing)

Christian’s Mom shared with me that the two boys and families became fast friends, following Christian’s passing Dylan even stood in her wedding. His Mom wanted me to share with everyone reading this that even in his darkest times, Christian was always happy. A doctor on the palliative pain team at children’s hospital said he’d never seen a baby so good spirited. He said ” no matter what gets thrown Christian’s way, his natural inclination is to ‘lean toward happy’… its remarkable, really!” That stuck with Christians Mom and has been a huge piece of her grieving. When things get tough, she remembers Christian’s resiliency and leans toward happy.

We NEED a cure for Melanoma. No family should endure what either of these boys families have, whether it’s in the form of loss, or prevention.

I was talking with one of Dylan’s parents today and I felt silly for my worry surrounding Mermaid’s nevus. She gently reminded me that we are all on a different journey, and she is right. We all have struggles and concerns valid to our lives. Some bigger than others, but in no way, shape or form, does it make any of them less.

As I’m sure you can imagine, with surgery comes cost and time off of work for his family. He has an amazing family that has done everything they can, and will continue to do everything they can to ensure his wellbeing. Right now, it’s our turn to help ease their burden, just as they have done for Dylan his entire life.

Dylan’s family has put together a fundraiser where they are selling water bottles and shirts to raise money to help offset some of the cost following surgery. You can donate or order using the link below.

http://fnd.us/01ASMb

I know we can’t always give by way of money and sometimes the biggest gift is that of prayer. So as October rolls around, keep this little slugger in your thoughts, give the family some encouraging words and tell them Mommy’s Mermaid sent you!

You can read about the specifics or follow Dylan’s story on his own personal facebook page at:

https://www.facebook.com/DylansAmazingJourney

To follow Christian’s mom on her path of recovery and learn more about his short but meaningful journey you can go to:

https://www.facebook.com/ChristiansSpecialSpots/?fref=ts

To Dylan, you are stronger than most people I know, you will heal and once again amaze us all. I have no doubt that Christian will be by your side through your entire process. You will be back on the ball field before you know it, and think of it this way, while your home healing, you can enjoy the world series! You will be in our thoughts and prayers before, during and after your surgery.

Tanya, Kara and Nikki – your strength is far from unnoticed. To Tanya and Kara, I want to thank you for trusting me with you stories, emotions and lives. I think I will forever remember to “lean towards happy” when I am having a rough one.

“Our wounds are often the openings into the best and most beautiful part of us.”
David Richo

Thanks for walking with us today,

Mermaid’s Mommy

Make a brushstroke

This piece was both the hardest and most inspiring piece I have shared about a fellow nevus owner, I spent a significant amount of researching and learning about the journey the Lopez family is on; and where I could never begin to scratch the surface of what they have endured, I hope to highlight in this brief post the most important facts surrounding their situation. It in no way, shape or form takes anything away from any nevus owner, but the unique situation this family is in, adds another layer of complexity to not only their child’s disease; but his ability to receive care. I have stated before that I intend to learn and teach about all forms of nevus and have been lucky enough to connect with a special family in Colombia to share a bit of their story with us. Nevus itself comes in many forms. One of the more rare and complicated types is Giant Congenital Melanocytic Nevus.

Let’s start by learning what Giant Congenital Melanocytic Nevus is:

Giant congenital melanocytic nevus occurs in approximately 1 in 20,000 newborns worldwide.

Giant congenital melanocytic nevus is a skin condition characterized by an abnormally dark, noncancerous skin patch (nevus) that is composed of pigment-producing cells called melanocytes. It is present from birth (congenital) or is noticeable soon after birth. The nevus may be small in infants, but it will usually grow at the same rate the body grows and will eventually be at least 40 cm (15.75 inches) across. The nevus can appear anywhere on the body, but it is more often found on the trunk or limbs. The color ranges from tan to black and can become darker or lighter over time. The surface of a nevus can be flat, rough, raised, thickened, or bumpy; the surface can vary in different regions of the nevus, and it can change over time. The skin of the nevus is often dry and prone to irritation and itching (dermatitis). Excessive hair growth (hypertrichosis) can occur within the nevus. There is often less fat tissue under the skin of the nevus; the skin may appear thinner there than over other areas of the body.

People with giant congenital melanocytic nevus may have more than one nevus (plural: nevi). The other nevi are often smaller than the giant nevus. Affected individuals may have one or two additional nevi or multiple small nevi that are scattered over the skin; these are known as satellite or disseminated nevi.

There is a 1-2% chance of Melanoma developing in those with CMN and these typically develop by age 5. (note: Mermaid’s possible complication is also typically developed by age 5, I found this to be an interesting connection)

Synonyms of Giant Congenital Melanocytic Nevus:

Bathing trunk nevus, Cape Nevus, Congenital pigmented nevus, Garment nevus, Giant brown birthmark, Giant hairy nevus, Giant hairy pigmented nevus, Giant mole, Giant nevus, Hairy birthmark, Leptomeningeal melanosis, Multiple congenital melanocytic nevi, Neurocutaneous melanocytosis, Neurocutaneous melanosis, Satellite nevi, Swimming trunk nevus.

 

Let’s meet Lucas:

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Lucas was born in Colombia on August 9th 2014, to Pedro and Angela with a giant congenital melanocytic nevus on the left side of his face. You can imagine as any parent would feel, the fear that ensued. Pedro stated that they felt overwhelmed because the Doctors didn’t know how to treat it or how to proceed.

While this condition is not threatening his life at the moment, Doctors have recommended its removal due to a history of skin cancer in Lucas’ family (Melanoma) and to correct a deformation.

Lucas had his first surgery April 23rd 2015, at the young age of 8.5 months old and his most recent surgery was completed February 18th 2016 but he is doing well and getting stronger every day. Lucas will be back to his favorite pastime of playing with cars in no time at all!

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Because of the complexity of his case, Lucas has to travel to the US for treatment, from Colombia (South America).

The Physician’s in Colombia did not have enough experience with the removal process, specifically on the face so the family made the decision to bring baby Lucas to the US to receive treatment in Chicago. They continue to reside in Colombia and travel to the US for each consult and surgery. Their insurance does not cover the procedures here so everything has to be paid for in cash.

The reason for the entire procedure is to prevent future physical degradation of the CGMN and melanoma.

The total number of procedures suggested is of 9, however, there is a chance of having that reduced to 6 depending on how well treatment works along the way. Below is a suggested timeline for Lucas.

1st Procedure: Healthy skin expansion, April 2015 – (Schedule update DONE)

2nd Procedure: Nevus partial removal, July 2015 – (Schedule update DONE)

3rd Procedure: ear reconstruction, November 2015 – (Schedule update DONE) the surgery was in December 4th Flap Reconstruction, Part of ear reconstruction, Healthy skin expansion

4th Procedure: Healthy skin expansion November 2015, (Schedule update DONE) Change the schedule to February 18th 2015, Nevus partial removal

5th Procedure: Nevus partial removal. February 2016, Schedule update Change the schedule to June 2016 Nevus partial Removal

6th Procedure: Healthy skin expansion June 2016, Confirmation pending

7th Procedure: Nevus partial removal. September 2016, Confirmation pending

8th Procedure: ear reconstruction, September 2017 Estimated

9th Procedure: ear reconstruction, September 2020 Estimated

The total estimated time frame is 5 years (subject to funds, medical team availability and trips)

Budget

1st and 2nd procedures: US $ 54299 DONE

3rd to 5th procedures: US $ 71428

6th and 7th procedures: US $ 54199

8th procedure: US $ 36347

9th procedure US $ 39618

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Budget includes: Doctors, anesthesia and hospital fees. Travel expenses between Colombia and the US. Living expenses and health insurance in the US for Lucas and his parents.

The power of love is a beautiful thing, understandably Lucas has amazing parents that are going to every length to ensure he receives the best treatment possible but they are not doing it alone, nor without returning some of that generosity extended to them.

The Lopez family has set up a foundation in Colombia to help others with CMN. Through a combination of this foundation and a crowdfunding account they raise funds to cover all the costs. Recently, there was a change in the exchange rate lessening the amount of US dollars received through donations but their hard work and dedication to making all of this possible actually brought in more donations than needed and just moments before Lucas finished his last surgery, they exceeded the amount needed for this round of treatment.

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I asked the family to share with me any positives they have found throughout their journey and what they would like to share with other families going though similar experiences. The response I got was simple, yet powerful. They enjoy helping others and meeting wonderful  families with incredible journeys, Pedro said “Your baby is a miracle that will challenge you to do amazing things, stay strong.” Is that not the truth.

I keep the very first piece I ever wrote as a permanent sticky on our website because it reminds of where this whole journey began, that place of fear and desperation. I often forget I ever felt that way because I am surrounded by so many amazing people who fight not only for us to find treatment and cures, but for everyone effected by this disease, despite it’s form. Had I opted not to start this I may never have come across this amazing family.

Pedro made a comment on one of his fundraising sites that nailed the emotional roller coaster we are all on.

“We are all supporting actors in a story,

Recently I heard a message that mentioned how we ask many times questions about why we go through certain situations we do not understand and feel that life has been unfair to us. Why? Why? It is in our mind for no apparent answer, only time will give us the answer, and further away from our lives the butterfly effect will be reflected in the offspring of our next generation.

But meanwhile we can see small brushstrokes of such great masterpiece as evidence of what we are doing is not only for our child but also to impact the lives of others who are going through similar situations to ours.”

“Small brushstrokes of such great masterpiece”

Every move we make to put those effected by this disease at the forefront of our day, if only for a moment, is a small brushstroke.

We always speak about the strength and courage of those with a nevus and our support naturally goes to the individual effected, but it’s important to remember the families as well. In this case the Lopez family is traveling to a different country, without insurance and uprooting their lives to support their son. Pedro and Angela – you are in my thoughts as well and Lucas is lucky to have such strong role models in his life.

To learn more about Lucas’s journey or to donate you can visit their page at:

http://www.youcaring.org/lucaswantstoprevent

Thanks for walking with us today,

Mermaid’s Mommy