Emma, My Sister

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Emma is my 7 year old sister. She was born with a genetic disorder called Neurofibromatosis Type 1 or NF-1.  It's a disorder that causes a variety of symptoms including neurofibromas (growths) on or under the skin, tumors on nerve endings throughout the body, learning disabilities, large heads, scoliosis and congenital defects of the long bones.  There are other rarer side effects such as early/late puberty, growth problems, mental retardation, brain tumors, epilepsy, an increased risk of certain types of cancer, strokes,and high blood pressure.  Luckily 60% of people with NF-1 will never experience any problems, another 20% will need one or more surgeries and lastly, 20% will experience severe problems.
 
Unfortunately, Emma falls into the last category.  When she was 15 months old she broke her leg.  At that time she was diagnosed with pseudoarthrosis of the tibia.  This is when the tibia breaks and it forms a false joint and doesn't heal correctly.  Statistics indicate that 80% of people end up with amputations due to this.  Since that time Emma has worn an ankle foot orthotic (leg brace) to protect her leg.  This past summer, a routine eye exam showed pale optic nerves and the Doctor ordered a MRI.  Emma had fluid on the brain & a brain tumor.  She was immediately sent to Madison.  Emma had a 4 cm. X 4 cm. tumor removed from her left temporal lobe and a VP shunt placed due to hydrocephalus.  She also has an optic glioma on her optic chiasm which is currently on a watch and see basis.  This causes Emma's eyesight to be extremely poor @ 20/200 which is legally blind.
 
In January she had a follow-up MRI that showed the tumor had grown back.  Once again she had to have this surgically removed and at the same time had some more surgery done on her leg.  That made the 7Th brain surgery since July.  She is now having weekly chemotherapy  in Madison for 10 weeks.  After a break of about 5-6 weeks she will then start another regimen of chemo in Madison that will be 4 weeks on and 2 weeks off for the next 12-15 months.  Emma is an amazing young lady who is strong willed and tough.  She has taught those around her a thing or two about resilence.  She is such a thankful little girl that is so caring towards those around her.  At 7 years old she knows way more about Doctors and hospitals than any young child or adult should ever know.
 
To learn more about NF go to CTF.org