This is some friends of ours and I have been putting this off for a couple of weeks but keep feeling VERY strongly that I need to post this (hope you and D don't mind, Alisa). I feel that I always am posting good, positive things. Life is not like that at all...we all have bumps and trials along this path we call LIFE. This is one of their bumps along this path of life...although none of us know why we have to face these bumps or trials it makes me remember the quote "he never said it would be easy, he only said it would be worth it." For some reason Dakota has been chosen to go though this.This is Dakota (5 years old) she has Type I Neurofbromatosis.
Neurofbromatosis (NF) is fairly common hitting 1 in every 3,000 births. She has to be checked out regularly (eye exams, neurology exams, auditory exams, etc.) to stay on top of it, as well as looking for more visible signs of the disease...aka more lumps, and seeing how she does in school, learning-wise. No one knows with each case of NF the severity in which it will affect each patient...she may pass through life with very few problems, or she may become blind, deaf, have seizures, and get grotesque lumps all over her face, arms, legs, etc. If they catch it soon enough with each breakout, modern medicine has come so far that they can do a lot with lasers.They have went to a geneticists and were told they don't want just anyone touching her. The case with plexiform neurofibromas is that surgery can potentially be very dangerous. These types of tumors bleed if not handled with care. Asking any surgeon to go in and take them out without knowing what the tumors are is not smart, aside from the fact that a mishandled surgery could really mess her up for life (in the nerve department, mobility, excessive bleeding, etc.). The geneticist is very adamant about letting her lead us to a very, very skilled and experienced neurosurgeon who knows what he/she is doing.
They received a call from the Genetics Dept. up at Primary Children's Hospital in Salt Lake City. Dakota had an appointment on January 20th, with Dr. David Viskochil, who the clinical geneticist, professor of pediatrics, and is co-director of the Neurofibromatosis Clinic at the University of Utah. They were VERY lucky to have gotten in so quickly. He usually has a 5 month wait-time.
I feel VERY strongly for a reason to ask for the simple favor to offer your prayers. Dakota has been diagnosed with her first tumor. Her dad told me it starts in her neck goes over her lung and ends under her armpit. I hope you all will think of cute little Dakota and even though you may not know her and her family please KEEP HER IN YOUR PRAYERS along with her family. There family would be so grateful for each one of you. Dakota is second to the youngest child of 4 girls. I love this family dearly. They were in on me and Scott's Temple sealing with our boys and are like family to me! I feel this is something small I can do for them! May the Lord bless you and your family during this difficult time! You are in our prayers ALWAYS. We love you Dakota may the lord bless you with strength and courage at this time!
Love...
Scott, Mandi and the boys
