Celebrating 35 Years
neurofibromatosis, nf, nf1, faces of nf, neurofibroma

Collin- A Face of NF

Hi, my name is Jean. My son, Collin, was diagnosed with NF1 at the age of 1. He was a
healthy child at birth. I immediately noticed he slept much longer than his older sister did at the
same age. As he grew I noticed that he had a number of birthmarks. They were the color of café’
au lait. I knew from my own training as an optometrist that these could indicate NF. I had
mentioned them several times at his well baby check ups, but his MD never seemed concerned.
Finally I came out and asked if the birthmarks could be from NF, and that I wanted to find out.
The doc agreed and said he would set us up to be seen at the Genetics Dept. at the University
of MN Medical Center.
We spent several months going to appointments and procedures, including a MRI, where Collin
was put under with anesthesia. I cried and worried and prayed as I watched his eyes roll back
as he fell asleep. The testing showed the typical signs of NF1 and we had our diagnosis. It
was so hard dealing with the diagnosis. We knew his future could be greatly impacted by this!
At that time a song came out on Christian radio called “He’s My Son” by Mark Schultz. There is
a line in it where he is pleading to God: “If you can hear me, let me take his place somehow”.
This is exactly how my husband and I were feeling! I wept every time this song came on. In fact, I
had to turn it off because it was too hard to bare.
My husband and I had made up our minds that we would help Collin achieve all that he could,
despite this diagnosis! He was slower in development and struggled with motor skills. By the
time he was in school we requested evaluation for an IEP (Individual Education Plan) He
qualified for help with reading and motor skills. He spent some early years with an occupational
therapist and a Title One reading instructor. Through middle school and high school, he
continued to get assistance through IEP. All through these schooling years Collin was very
smart intellectually, but he just couldn’t get answers from his brain to the paper. If he was
quizzed orally he did outstanding! There seemed to be a disconnect between his brain and the
fine motor skills needed to correctly write out the answer on paper. By senior year, Collin was
able to achieve a scholarship at a local community college, where he got an Associate of Arts
degree in Computer Integrated Machining. He has been working full time since then and
continues to work towards a bachelor’s degree in engineering at the University. By the age of
22 Collin decided to buy a house. He had saved up his money and was able to get a mortgage
without us having to co-sign! Very impressive for a child that has faced many obstacles! We
are so proud of him!
When Collin was about 5 years old, we switched his medical care to Mayo Clinic in Rochester.
They have a wonderful NF specialist there in the Genetics Dept. He has had additional MRI’s
and several surgeries to remove subcutaneous tumors and a large plexiform tumor. He
also had his appendix removed and a hernia repaired. He has always just taken any setbacks
or struggles in stride. His tumors have slowed down and we hope and pray that he continues to
be in great health. We are thankful to God for giving us such a wonderful son! He certainly did
not let NF hinder his goals and aspirations!

See More Faces of NF/Read Their Stories


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