Life with a Large Nevus - Personal Stories

Zelma's Story

My name is Zelma, and this is my personal story.

I remember the overwhelming joy my husband and I felt when I found out that I was pregnant. We were married only for 3 months, but we could not wait to start a family. I had a pretty normal pregnancy, without any complications. The due date was 15 January 2005, however, Jason was born on the 30th of December 2004, it was unexpected when I went into labour, but I was amazingly so exited about my little boy’s birth.

 

I was in labour for an entire day when eventually Jason was born at 9:20 PM that evening. I remember the doctor mentioned a birth mark, but I didn’t notice anything, I was too exhausted to feel anything but relief that my child was born. The love I felt when I took Jason in my arms was like nothing I could have ever imagined, in my eyes he was my most precious gift and I was so proud to be his mommy. My husband was also proud of his little boy, we were aware this stage of the birthmark but it was as though it did not even exist, the joy of having a son was greater than anything we ever experienced.

Later that night, after everyone left, Jason and I were alone. I remember thinking about the future, happiness soon turned to fear and this turned into sadness. I did not know what to expect, I felt so helpless. I started to think of the future, I was so confused, I did not know what to expect

all I wanted to do was cry. Our first night, I struggled with Jason. My first instinct as a new mom was to feed my child, I held him close as I tried to breastfeed him, but he resisted and eventually the nurses prepared a bottle for him which he also refused. The night was long and hard for me; I did not sleep at all. The next morning I received further bad news, my child had a cleft palate. My heart went out to my child that next day, doctors came and went, tests and photos were taken of him all day, and I felt so alienated and helpless towards my child. It was then that I decided, never in my life would I treat him any differently, or let him feel different, because I realised then, that Jason was and still is, special and precious to me. Eventually my son was diagnosed with Neurofibromatosis.

This is a life threatening disease, something I never singed up for, I was devastated. We received the same diagnoses from 3 different doctors, but Jason’s pediatrician referred us to his dermatologist, Dr Pieter du Plessis from the Little Company of Mary Hospital. He took away all fear when he told us this was NOT neurofibromatosis, but CMN. My child is different from others, but one of the most loving and caring little boys I know, as a family we just support Jason and try our best to give him a positive outlook in life, we treat him just the same as his little sister, and in our eyes he is a

normal little boy.

 

To all other parents I just want to say, always keep the faith, never give up and support your child with a positive outlook in life, we will always go through challenges, but we should be proud and remember; God blesses us with these children and these children with us as their specially chosen parents. Jason received surgery for his cleft palate after 7 months which was a successful operation.

Today Jason is a 12year old boy, enjoying life to the fullest.

Michele's Story

A "normal" family with an everyday life, work, school and family, and we get the exciting good news - we are going to have another baby! We have been waiting so long! Nothing prepared us for the day our baby angel was born! Nothing showed on our ultrasound scans, nothing looked abnormal, but our sweetpea was born with something we didn't know anything about. This was really scary, we did everything we had to during the pregnancy… what did we do wrong? After specialist and specialist and doctor after doctor we finally got our answer... little Pieter was born with LCMN. After reading everything we could and understanding better, we started our new journey... some more scary moments, new challenges and many worries if he will be ok? A few terrifying biopsies, after a long search we found more nevi angels in our country and we had the great idea to have our yearly “get-together". We have support from other families with the same everyday struggles as we do. And this is so much help. But we still take our journey one day at a time.

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