Saturday, August 8, 2009

Neurofibromatosis a fathers emotional roller coster

The day before my daughters first birthday we (my wife and I) were called into the pediatricians office after an MRI. I wish that there was an easy way to tell you this but the conclusion of the MRI Is your son has NF1 Neurofibromatosis type 1 with a 9mm lesion at the back of his brain near base of his scull, and numerous fibroid said the pediatrician. Neuro what I said but I could not breath heart was pounding although I wasn't sure about the disease yet I did know that a lesion was a bad thing to have in the brain.

Now as time went on some research and talking to Doctors, Neurofibromatosis is refer to as NF there are two types NF1 and NF2. NF1 is a disease that can cause enlargement and deformation of bones and curvatures of the spine can happen. this disease can affect nerves everywhere in the body and can at times develop tumors in the brain, on cranial nerves or on the spinal cord. NF1 is also called Von Recklinghausen.

type 2 has loss of hearing from tumors on the hearing nerve skin disorders and abnormalities, Brain tumors, and spinal.
There is a 3rd type of this disease called Shwannomatosis its little known but seems to have a small combo of both types of NF

Now imagine being that father being told this I wanted to die it ripped the heart and soul out of me but I had to and still try to remain the tough guy, my wife was a mess and to be frank she still is. Because people with this disease are more pronned to neurological disorders we found out that he ended up with hydrocephalus which took 3 brain surgeries to get it under control in 1 year. Aside from this there is the fact that they have a 50/50 Chance that's 1out of every2 chance of passing on the gene and not sure how true it is because no-one will give me a straight answer but I heard that if he marries a girl with the disease and has a child there is a very high risk of birth defects and down syndrome etc.etc. How am I as a father going to look my son straight faced in the eye and tell him this its eating me alive. I'm hard on him because I don't want him to use it as a crutch in life but at the same time I feel like a dirt bag he has every right to use it as a crutch. I hope that no- one ever has to go through this ever the constant worries of possible seizure's will a tumour grow is his body going to get all bumpy will anyone Love him if he does I WILL.
You know when things like this happen you blame your self and being that its primarily genetic you really blame yourself they wont test us because we are not having more kids. Through the whole ordeal we have never lied to him and he goes to MRI after MRI and blood test after blood test and specialist to specialist and he is the bravest kid Ive ever known he must be like his mom because I'm a wimp. At time he asks questions like why do I have spots on me? am I normal? and again I say again its killing me slowly from the inside out. How? Why? I once got so emotional like right now, that I said to Him Nick Please remember one thing if ever you want to hate or blame someone for this don't blame your Mom its not her fault she loves you Blame me I love you with all my heart but blame me. YOU KNOW WHAT THIS 6 NOW 7 YEAR OLD SAID TO ME DAD ITS NOT YOU FAULT ITS NO_ONES FAULT GOD MADE ME SPECIAL. If I'm Lying I'm dying, AND how true that is you truly are a special gift from god to us and anyone who has had the honour to meet you always say the same thing You May Have NF1 But NF1 has got nothing on you baby boy.

In ending this blog I strongly urge you to please sign the petition I did not go in to great detail about the disease but look it up google it look at some pictures join the facebook group Neurofibromatosis and read what some of the people affected with this disease are going through and don't sign it just for me or because you feel you have to.Do it because like me either you never ever heard of this disease and awareness needs to be brought to this or maybe just because its a good cause. I thank you Nicholas thanks you and everyone affected with this condition thanks you

22 comments:

kristi said...

God Bless you and your family.

I have NF, as do 2 of my children....there is so much hope -- never give up!

Joe Gunn said...

If you are interested in raising more awareness, I run with the NF Endurance Team which is a part of the Children's Tumor Foundation and we could always use more runners, cyclists, swimmers, walkers, and sideline volunteers to help spread the word and raise money to find a cure.

There are also support chapters all across the country if you are interested. Just let me know and I can get you more information.

Keep up the hope. We're getting closer to a cure one step at a time. http://www.ctf.org/endurance
http://nfenduranceteam.blogspot.com

aperfectbeginning said...

Hi Joe,
I found you through the NF Endurance page. This is Sandy...I sent you a message in your inbox.

Please don't lose hope. I'm 24, and I have NF1. I have had my struggles, although I am thankful that I only have "mild" symptoms of NF. Although I have struggled with self-esteem, fear, and self-doubt, I have become more and more appreciative of my body, and what I have. I am in a PhD program now,and I am also planning to push more than my mind...I want to push my body and do a half marathon!!

I know that learning disabilities are often associated with NF, but please remember that doesn't mean it will set definite limits.

You seem to be a caring, loving father. I have no doubt that it will be challenging as you begin this journey, but I also know that you will raise your son to be know that this disease does not define him. He is NOT his disease. It is only a part of him.

With love, hope, and wishes of health,
Sand

aperfectbeginning said...

Oops, I just realized that you are someone else. I apologize! I just clicked on another person's site...sorry!

Still, I wish you the best in everything

Take care,
Sandy

Anonymous said...

perceptive spring pendants [url=http://www.blingforfun.com]hip jump jewelry[/url],[url=http://www.blingforfun.com/pendants/cat_9.html]hip hop pendants[/url],informed voyage watches,[url=http://blingforfun.com/belts/cat_18.html]bling bling[/url] ,hip spring,[url=http://blingforfun.com/chains/cat_7.html]hip hop chains[/url],cool hop bling,[url=http://blingforfun.com/chains/cat_7.html]iced visible chains[/url],[url=http://www.blingforfun.com/chains/cat_7.html]wholesale chains[/url]
hip spring jewelry

Anonymous said...

identify value date dating fender jazz bass [url=http://loveepicentre.com/]thirtyplussingles[/url] code to run query after updating form http://loveepicentre.com/ downloadable simulation dating games

Anonymous said...

new york medical examiners [url=http://usadrugstoretoday.com/categories/schlafen-hilfe.htm]schlafen hilfe[/url] child caught smoking marijuana http://usadrugstoretoday.com/products/ampicillin.htm dosage of same http://usadrugstoretoday.com/products/zelnorm.htm
blood pressure and heart attck [url=http://usadrugstoretoday.com/products/paroxetine.htm]paroxetine[/url] stress testing forex risk examples [url=http://usadrugstoretoday.com/categories/miglioramento-femminile.htm]all health organization only[/url]

Anonymous said...

http://www.michaelmckimmy.com/dw/viewtopic.php?f=2&t=7220 http://www.einsteinworld.com/forum/viewtopic.php?f=2&t=139832 http://www.kiaikyusho.com/foro/viewtopic.php?f=13&t=274 http://www.petrovocab.com/talk/viewtopic.php?f=1&t=190151
http://bezpredel.lv/forum/viewtopic.php?f=2&t=50338 http://sm.gjaj.net/index.php?topic=102130.new#new http://nlinewlong.co.kr/board/board.cgi?bname=nlinewlong&action=view&page=1&unum=25439&noInc=1&SID=f61e1b4d7a53614199de27ec302af0aa http://forum.power-love.com/index.php?topic=270195.new#new
http://www.racefreakz.nl/forum/viewtopic.php?f=8&t=55349 http://lasvegaspromocodes.com/viewtopic.php?f=4&t=169834 http://www.forum.wickywicky.com/viewtopic.php?f=17&t=3525

Anonymous said...

discount designers handbags http://topcitystyle.com/2-years-new-size33.html tubbs odyssey snowshoes [url=http://topcitystyle.com/black-tracksuits-color2.html]compare yves saint laurent mascara volume no eff faux cils[/url] zara ladies fashions
http://topcitystyle.com/men-page88.html work clotheswork clothes [url=http://topcitystyle.com/luscious-lavender-women-color234.html]easy spirit amerigo shoes[/url]

Anonymous said...

elisabeth hasselbeck shoes http://topcitystyle.com/lingerie-category73.html childrens shoes [url=http://topcitystyle.com/xxl-sport-pants-size8.html]designer japanese toys[/url] clothes dryer remove ink
http://topcitystyle.com/t-shirts-for-men-dolce-amp-gabbana-category40.html buy designer handbag [url=http://topcitystyle.com/yellow-on-sale-color44.html]poetry womens clothes[/url]

Anonymous said...

adult vacations in the dominican republic http://theporncollection.in/sex-mature/mature-naked-free-pics
[url=http://theporncollection.in/moms/did-dr-jan-adams-preform-kenyas-moms-surgery]cumming with dildo[/url] free printable daily adult cleaning house checklist [url=http://theporncollection.in/lubricant/stamping-lubricant]stamping lubricant[/url]
amateur free porn xxx http://theporncollection.in/masturbating/glossybabes-masturbating
[url=http://theporncollection.in/lesbian-sex/lesbian-housewives]sam and jeff porn[/url] hentai image packs [url=http://theporncollection.in/porn-girl/cp-pre-teen-girls-fucking-porn]cp pre teen girls fucking porn[/url]
us virgin island all inclusive resorts http://theporncollection.in/hentai-sex/sonic-hentai-by-kio
[url=http://theporncollection.in/lubricant/castle-silicone-higge-lubricant]over 60s porn pics[/url] self powered dildo bench [url=http://theporncollection.in/gay-love/gay-get-rich]gay get rich[/url]
free full length amatuer porn movies http://theporncollection.in/lesbian-sex/turning-your-husband-into-a-lesbian
[url=http://theporncollection.in/lesbian-porn/lesbian-massage-therapist-portland]hentai r[/url] dildo giant [url=http://theporncollection.in/gay-boy/naked-gay-japanese-free-clips]naked gay japanese free clips[/url]

Anonymous said...

sex lubricant feedback http://xwe.in/ass-sex/rectal-ass-stories
[url=http://xwe.in/fetish/pot-belly-fetish]animated ass beads in the anal[/url] free amateur [url=http://xwe.in/erotic-gay/erotic-3d-beast-comics]erotic 3d beast comics[/url]
adult help for reading scanners http://xwe.in/orgy/calgary-orgy-movies
[url=http://xwe.in/fetish/guillotine-fetish-bdsm]christina aguilera porn video[/url] free full length porn mpegs [url=http://xwe.in/ass-video/videos-of-girls-with-doing-ass-dance]videos of girls with doing ass dance[/url]
swepco lubricants http://xwe.in/orgy/bit-torrent-drunk-sex-orgy
[url=http://xwe.in/shemales/shemales-in-anchorage]large amount personal lubricants[/url] adult male circumcised penis photos [url=http://xwe.in/handjob/handjob-with-toy]handjob with toy[/url]
adult pre bronze http://xwe.in/hcg-oral/oral-language-across-the-curriculum
[url=http://xwe.in/orgasm/free-teen-porn-orgasm]first time anal abuse[/url] anal bloopers [url=http://xwe.in/hcg-oral/oral-language-pieces]oral language pieces[/url]

Anonymous said...

error windows vista movie maker unable to find dvd [url=http://full-length-movies.com/dvd-quality-movie-die-hard--1-2-3-/21514database/]Die Hard (1,2,3)[/url] body shot the movie [url=http://worldmovs.co.cc/full_version-brubaker/13464database/]Brubaker[/url]
elmhurst movie theatre [url=http://full-length-movies.com/dvd-quality-movie-the-day-after-tomorrow/2563database/]The Day After Tomorrow[/url] silent movie actors [url=http://worldmovs.co.cc/full_version-religiues-do-mundo---02-antigas-religiues-da-bacia-do-mediterrneo/13507database/]Religiues Do Mundo - 02 Antigas Religiues Da Bacia Do Mediterrneo[/url]
mr woodcock review movie [url=http://full-length-movies.com/dvd-quality-movie-la-noche-de-los-girasoles/29614database/]La Noche De Los Girasoles[/url] weird sex movie [url=http://full-length-movies.com/dvd-quality-movie-pct/19945database/]PCT[/url]
all quiet on the western front 1979 movie [url=http://full-length-movies.com/dvd-quality-movie-jumper/9431database/]Jumper[/url] beautiful boxer movie trailler [url=http://full-length-movies.com/dvd-quality-movie-21-the-movie/7695database/]21 The Movie[/url]

Anonymous said...

giada de laurentiis sexy http://www.thefashionhouse.us/de-puta-madre-69-t-shirts-for-men-brand15.html mozart eine kleine [url=http://www.thefashionhouse.us/pullover-page6.html]pictures of mens and womens shoes from the medieval times[/url] course fees in fashion tech in singapore
http://www.thefashionhouse.us/black-beige-women-s-tops-color205.html skate shoes for sale online [url=http://www.thefashionhouse.us/grey-sweaters-color1.html]west palm beach fashion[/url]

Anonymous said...

what herbs counteract birth control pill [url=http://usadrugstoretoday.com/categories/ayuda-para-dormir.htm]ayuda para dormir[/url] integrated health correspondence courses on line http://usadrugstoretoday.com/products/speman.htm
health grade golden colorado [url=http://usadrugstoretoday.com/categories/antibiotici.htm]antibiotici[/url] restonic health rest [url=http://usadrugstoretoday.com/products/revia.htm ]er for medical care instead of physician [/url] used medical equipment hoyer
central pennsylvania blood bank [url=http://usadrugstoretoday.com/products/synthroid.htm]synthroid[/url] bacteria in industry http://usadrugstoretoday.com/categories/cholesterin.htm
free penis pics videos [url=http://usadrugstoretoday.com/products/provigrax.htm]provigrax[/url] easy loss rapid safe weight [url=http://usadrugstoretoday.com/products/oxytrol.htm ]electrical problems of the heart [/url] sleeping sex game

Anonymous said...

tfo breast cancer rod [url=http://usadrugstoretoday.com/products/phosphatidylserine.htm]phosphatidylserine[/url] is diet soda really diet http://usadrugstoretoday.com/products/aciclovir.htm
buy frisium without a prescription [url=http://usadrugstoretoday.com/products/glucotrol-xl.htm]glucotrol xl[/url] analysis the breast giver by mahasweta devi [url=http://usadrugstoretoday.com/products/accupril.htm ]ionization and photoelectric smoke alarms [/url] age kidney size
urinary tract infection in cat [url=http://usadrugstoretoday.com/products/metformin.htm]metformin[/url] nuclear testing for heart disease http://usadrugstoretoday.com/products/viagra-plus.htm
good diet for a cold [url=http://usadrugstoretoday.com/categories/anti-alergica-y-el-asma.htm]anti alergica y el asma[/url] prescription pad policies [url=http://usadrugstoretoday.com/products/yasmin.htm ]breast feeding disadvantage [/url] alameda county medical center

Anonymous said...

rhyme for tying shoes http://www.thefashionhouse.us/-casual-men-category41.html calvin klein accessories [url=http://www.thefashionhouse.us/41-shoes-size22.html]lauren jackson[/url] how to dye satin shoes
http://www.thefashionhouse.us/fred-mello-casual-brand105.html mcklein navigator luggage [url=http://www.thefashionhouse.us/?action=products&product_id=35]easy spirit amerigo shoes[/url]

Anonymous said...

diesel shoes website http://www.thefashionhouse.us/xl-hoodies-size6.html indianapolis website designer [url=http://www.thefashionhouse.us/light-blue-men-color58.html]mike mclaughlin magic shoes racing[/url] spain wholesale fashion
http://www.thefashionhouse.us/white-sky-blue-brown-pullover-color173.html history fashion australia [url=http://www.thefashionhouse.us/christian-audigier-women-brand106.html]tools klein buy[/url]

Anonymous said...

total chaos offroad long travel suspension http://xwl.in/adventure/adventure-quest-hack world wide sports travel scam fraud uk
[url=http://xwl.in/travel/travel-channel-hd]order free asia travel guide[/url] geography travel brochure lesson plans [url=http://xwl.in/cruises/cruises-critic]cruises critic[/url]
travel deals to florida keys http://xwl.in/vacation-packages/find-cheap-vacation-packages-to-santa-fe-new-mexico
[url=http://xwl.in/tours/sais-interbus-tours-sicily-taormina]daily log travel[/url] rosenbluff travel [url=http://xwl.in/map/las-vegas-strip-hotel-map]las vegas strip hotel map[/url]
travel trailer tub enclosure http://xwl.in/cruises/dining-carnival-cruises los altos travel [url=http://xwl.in/tourist/tourist-attractions-in-northwest-territory]tourist attractions in northwest territory[/url]

Anonymous said...

cosmo shoes http://luxefashion.us/turquoise-white-color98.html matthew hellyerretro lamp designers [url=http://luxefashion.us/on-sale-page28.html]puma ferrari shoes[/url] death rituals shoes
http://luxefashion.us/xxl-casual-fall-spring-size8.html gilda delaurentiis [url=http://luxefashion.us/zegnasport-dress-shirt-for-men-light-blue-white-item2450.html]who invented the clothes dryer[/url]

Anonymous said...

illinois casino blackjack rules http://xwn.in/slots_casino-slots-no-downloads a 1 bingo supplies and games
[url=http://xwn.in/betting_premiership-betting-exchange]national lottery syndicate website project[/url] river palns hotel casino laughlin [url=http://xwn.in/baccarat_baccarat-crystal-spoon-replacement]baccarat crystal spoon replacement[/url]
new york casinos http://xwn.in/keno_las-vegas-keno
[url=http://xwn.in/online-casinos_station-casinos-in-las-vegas]casinos in louisville[/url] bingo prints [url=http://xwn.in/poker-online_live-online-poker-tables-free]live online poker tables free[/url]
self exclusion from all gambling sites http://xwn.in/poker-online_poker-accessories computer gambling blackjack gambling [url=http://xwn.in/baccarat_baccarat-sites]baccarat sites[/url]

Anonymous said...

disney movie princess enchanted tales follow your dreams jpeg [url=http://moviestrawberry.com/films/film_shiloh_falls/]shiloh falls[/url] all tim robbins movie http://moviestrawberry.com/films/film_skeleton_key_2_667_neighbor_of_the_beast/ movie midnight express
physicians working on movie sets [url=http://moviestrawberry.com/films/film_swamp_devil/]swamp devil[/url] movie label software http://moviestrawberry.com/films/film_futurama_into_the_wild_green_yonder/ movie mart
partition movie [url=http://moviestrawberry.com/films/film_catacombs/]catacombs[/url] twin town movie
unsimulated amateur movie [url=http://moviestrawberry.com/films/film_the_great_ships/]the great ships[/url] croc movie sex http://moviestrawberry.com/films/film_dawn_of_the_dead_70/ movie this england
gi joe movie movie blog [url=http://moviestrawberry.com/films/film_oh_god_you_devil/]oh god you devil[/url] the wild one motorcycle movie http://moviestrawberry.com/films/film_gnomes_and_trolls_the_secret_chamber/ movie theater viewing habits