This page is for our 12 yr old son Max. He was diagnosed at 32mths with NF1. Currently Max suffers from speech problems, numberous cafe au laite spots, UBO's on his brain - these are like the cafe au laites and are not harmful - low muscle tone, a plexiform fibroma on his right elbow and some small learning diabilites. He was diagnosed with an Astrocytoma in November of '02
Max is an amazing kid and brother to his 8 yr old twin brothers Anthony and Noah. He works hard at school and with his therapy and is now understood almost 95% of the time! He is a loveable, caring and smart boy. Who inspires and amazes us daily. June 2003 Max had his 2nd 4mth follow up MRI and things again went great!!! The MRI showed no change in the tumor and no other problems. We have now been moved to every 6mths for the MRI's!!!
February 2003 Max had his 4mth follow up MRI and things went great!!! The MRI showed that the surgery to create a thrid ventricle has worked and the tumor is stable! So that means no chemo for now!!! We will be having another MRI in 4mths (JUNE). Max is doing great and has had no ill effects from the surgery or the tumor.
November 21, 2002 Max had an MRI on his head, which his Dad and I requested only because he hadn't had one in 2yrs. Thank god we asked for it because it found that he had hydrocephalus caused by a tumor in his mid-brain. He was admitted to the PICU of Floating in Boston on Thursday nite and surgery was done at 10am on Friday. They did a thirdventriculostomy - it is basically poking a hole in the floor of the third ventricle so that the fluid can drain out. The tumor is 6x7mm but is in a spot where they can't get to it. We will have another MRI in 3 mths and then do chemo if it is showing any growth. We are hoping that it is just a regular NF tumor - only 2% of those turn cancerous. We will update when we know more.
August 2002 Max had an MRI on his elbow for a suspected Plexiform Fibroma. The MRI confirmed that it is in fact a plexi. We will now just wait and see if it grows or causes any pain at which time it will be removed. If it shows no change which most of these plexi don't - then we will just leave it alone. What is Neurofibromatosis 1? Neurofibromatosis is a genetic disorder that effects 1 in 3,500 people. It can be inherited or caused by a gene mutation.
Some of the signs and symptoms of NF are:
*6 or more Cafe-au-laite spots (coffee stain like birthmarks on the skin. *Fibromas - small tumors on or under the skin *Scoliosis *Plexiform neurofibromas - larger more complex tumors. *Learning Disabilities *Freckling in the groin and underarms. *Spinal Cord tumors *Lisch nodules - spots on the eye *Optic nerve tumors *Speech impairments
If you have 2 or more of these signs then you may have NF and should seek a professional opinion.
Please sign our guestbook below and let us know you've been to visit. Please feel free to sign as often as you like.***Scott and Paul Danehy the husband of Dianne the nurse at the Clyde Brown Elementary School that Max attended will be running the Boston Marathon in Honor of Max!! They each need to raise $3,000 for NF Inc. NE to get an official number. We have found if we send a check in our name Scott's company will match it so we are asking that those who want to donate send a check made out to Scott Day and sent to him at 143 Dover Rd ~ Millis, MA 02054***
3rd Annual Faces of NF Benefit Dinner 2007 ~ Neurofibromatosis" Thanks to all who donated we raised $3,641 Above is a chart of all the money we have raised through our Ink Cartridge & Cell Phone Recycle Program. If you are interested in joining - anywhere in the country - please email me for information!Click the link below to see and order our "Faces of NF" products.
Order your NF Bookmark & Earrings by emailing me at KCDay234@msn.com - I will also take special orders for personlized items - for Mom, Dad, etc. All items are $10 plus $2 for shipping with 50% of the proceeds going to NF Inc Northeast.
Use GoodSearch.com for all your searches and NF Inc receives $.01 for every search so forget Google and use GoodSearch! Click the link below to start now!
Max's Amazing Teachers and Specialists
Max Day 1/9/06 Ms. Carlson - 4th Grade Class
The Fury of NF
I miss a lot of cool stuff in class And it is hard for me I have to go to the doctor’s office when we do something in class that I really want to do Especially when I have been waiting for a long time to do it There are seizures They are tough And surprising I have EEGs once a year I hate having to put wires on my head MRIs are twice a year I have to go to sleep for them NF pins are green and white NF is as itchy as mosquito bites NF is like really hard math NF is as hard as it can be
Lindsey On March 13, 2007 an amazing girl earned her Angel Wings. Lindsey Salsberry entered into God's arms after a long, hard fought battle against cancer which was a result of a NF tumor. Please pray for her family as they travel down this difficult road.
Journal
Sunday, February 8, 2009 7:49 PM CST
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Order your NF Bookmark & Earrings by emailing me at KCDay234@msn.com - I will also take special orders for personlized items - for Mom, Dad, etc. All items are $10 plus $2 for shipping with 50% of the proceeds going to NF Inc Northeast. 
