HAPPY NEW YEAR!!
But it doesnt stop me from enjoying time with my loving, wonderful, supportive family! And I know that Im truly blessed in that aspect. But the support of this group pulled me up out of a very dark place in my life. My FD is at a point where it is more dangerous to do any surgeries than it is to manage my symptoms. My faith is what sustains me but by educating others about this disease, I fulfil a purpose.. Ive shared alot of info with my docs!"
Jon takes warrior of the month for about 15 million reasons but I'd like to point out a few that I peronsonally think everyone should know about. First, Jon is a great advocate for FD/MAS. He knows how to make everyone smile even if they are having a bad day. His sense of humor can brighten anyone's day. His incredible attitude about life is something I admire most. He may get knocked down but always gets right back up and that's not something everyone can do! Sure, he has his off days but who doesn't? But with negative, Jon always can see the positive. He knows "there's a light at the end of the tunnel." On top of just being an amazing person; he's very intelligent and talented in pretty much everything he does. I'm sure you can see why Jon got the Warrior of the Month title. So, if you are lucky enough to know Jon then I know, that you know, he's one in a million and if you don't know Jon then you're missing something essential in your life! Keep fighting your fight Jon, we all have your back.
HAPPY NEW YEAR! HAPPY NEW YEAR! HAPPY NEW YEAR! HAPPY NEW YEAR! HAPPY NEW YEAR!
"There's a light at the end of the tunnel."
Brittany has always had this spring in her step. She never ceases to amaze us with her want and need to raise awareness for a cure for FD/MAS. We started making awareness video's using flashcards and she jumped right in and gave her story no matter how hard it was for her. Giving up is never an option for her and she knows how to keep your spirits up even if she is having a bad day. The one thing we admire about her is that she knows that it's okay to be weak every once in a while. She pushes through everything like a champion, like a warrior and that is what we find admirable.
Raya takes Warrior of the Month for her passion. Not just her passion to raise awareness but also the passion she expresses in her daily life. There's not a day that goes by that I don't see at least one person tell her how awesome she is for always standing up for what she believes in. That kind of passion that she illustrates is shined through by a natural born leader and if we ever want a cure for this disease we need more people like her willingly to take a stand and want to see a difference be made in the world. Keep on fighting and don't ever change.
Warrior of the month of May and June goes to a beautiful, intelligent, and spunky young girl. Emmaleigh is 7 years old and is going into the 2nd grade. She was diagnosed with autism at 3 years old and she has exceeded everyones expectations more then once. Not only has she became one of the top students in her class but she has won two competitions for competitive cheerleading. Call me bias but I nominated this little girl, and she won by votes by other FD Warriors by a landslide. Emmaleigh is my (Lauren Foster) daughter. The reason I nominated Emma is because I wouldn't be the warrior I am today without her ( and of course my son who is 2 now.)
Brittany is July's warrior of the month for more reasons then one. She has a radiant personality and her smile can light up any room. Brittany is a wife, a mother, and an inspiring FD WARRIOR. July was roug for her (not that any day is easy with Fibrous Dysplasia) but between the doctor visits and a new diagnosis she took it like a ChAmP! She's always there to lend a helping hand or a shoulder to cry on. We need more people in the world like her!
As We end 2016, we must give a shout out to our Warrior of the Month for December...bethany
"Be the change you wish to see in the world"
As we slide into 2016 the warroior that takes warrior of the month for January is Christina Schulz.
Christina takes warrior of the month for a handful of reasons. She's kind, determined and a true warrior. You never know if she's having a bad "FD day." She runs a fabulous etsy site online and the jewelry is just breath taking gorgeous with matches her to a T! She is one of the most geniue people I've ever met! On top of her creativity with being a jewelry designer, she also is a FANTASTIC writer. She has to have yet another surgery in January for her FD so we are going to keep her in our thought as she battles through this surgery and have a fast recovery! Check out her etsy site as some of the money does get donated! Also checkout our NEW FD Warriors creed. It was inspiried by about 25 different FD warriors but was written by this unstoppable woman!
Shirley has become November's Warrior of the Month for the ambition that she has. She unfortunately had to have surgery recently for the FD but yet, as we can see, she doesn't let it get her down. She smiles through the pain and gives others hope as she continues to fight this battle and prove what it really means to be an #FDWARRIOR. Life doesn't always happen the way we want it too or even the way we think it will but in my opinion as long as you have someone as upbeat and uplifting as Shirley in your life then, whatever it is, won't seem as bad. Thank you for being an inspiration to us all!
"Try not to become a person of success, but rather try to become a person of value."
"That's me after 4 hrs of throwing up, even with migraine meds and nausea meds. They did a CT and found different tumor behind my eyes and my skull base has narrowed pinching nerves and vessels. That's what FD is for me."
Warrior of the month goes to this special little girl. Her name is Alyvia and she is an #FDWarrior. Along with having FD she also has MAS. At 3 years old she is mostly wheelchair bound due to the FD/MAS and she's as sweet as she looks! Through it all she keeps smiling which is definitely admirable especially in a 3 year old! She's had a rough few weeks since having to go to into the purple cast in the picture below. Keep your spirits high warrior, it will help you keep going. Your FD Family is right here for you! Lets help show this warrior some love and go check out her facebook page where you can read her story!
July's Warrior of the Month goes to Brittany Aguilera
It's not everyday that you meet someone that can make such a huge impact in your life. Esther is that person for anyone that she comes into contact with. Not only is she beautiful and smart she also is an FD WARRIOR. She has always been a great advocate for FD/MAS and you can always count on her to put the spring back into your step and put a smile on your face. She's one of a kind and her friendship alone is too good not to have in your life. She has a way of making you feel like you're on top of the world even if she's goin through the same exact thing. Keep on fighting warrior. The world needs more people like you.
#GMH #GivesMeHope #FDwarrior #fibrousdysplasia #FightForACure #NeverGiveUp #FDFamily
"Hi! I'm Rylan and I'm 11 years old. I'm in grade 6. I have McCune Albright Syndrome/Fibrous Dysplasia. My mom says I'm 1 in a million and she often calls me a FD Warrior. I recently broke my right arm and it really hurt, A LOT! This is the 5th bone I've broken. If fibrous dysplasia could be cured, I would be so happy. I like to play the guitar, hang out with my friends and go to hockey and football games."
February's Warrior of the month is Brittany Anderson
Emma has been there pretty much from the start of it all. I was diagnosed with FD at 13 years old and just two short years later, at only 15 years old, I got pregnant with her. Between the pain with my FD and the pregnancy, I finished high school being homeschooled and graduating in the top ten of my class. She's watched me go through extreme pain where I couldn't get out of bed. She's sat by my side at the ER to get pain medicine because I couldn't take the pain anymore. She's sat in my lap while I cried, begging God to make me normal and take the pain away. She has helped take care of me after every surgery, watched me go through multiple therapies, injections and so much more. That is just what she's gone through dealing with my FD.
Jack takes the warrior f the month for March for having every quality that we look for in a warrior. At 5 years old, Jack has went through more in his life then many of us do in our lifetime while Always keeping a smile on his face. Since being diagnosed 2 years ago, he has had a surgery on his femur, a surgery to get a bone biopsy in his pelvis, and most recently a surgery to put a rod in his radius bone that kept breaking. He has had 4 bone breaks if you include the femur surgery where a small fracture was discovered during surgery.
"We are a pretty classic FD story where we found out from a simple xray that turned into a big cancer scare then calmed down to the whole good news/bad news situation with it being FD and eventually officially diagnosed with MAS. " says his mother Megan.
So as you can see, something that makes Jack even more special is he has one of the strongest support systems that I've ever seen. His parents show endless amounts of love and his siblings are his best friends. The teamwork and unconditional love that flows through this family is breath taking.
This family are the #UltimateFDWarriors
As we spring into April, we recognize someone special to the FD/MAS community and family; someone that takes awareness seriously and understand the power of all of the FD/MAS community sticking together. We recognize someone that doesn't loose hope even when odds are against them. That person this month is Kathy Crews. As most people FD hasn't been a friend to her but she's always overcome the obstacles and came out on top. Don't ever change. The world need more people like you!
HAPPY NEW YEAR! HAPPY NEW YEAR! HAPPY NEW YEAR! HAPPY NEW YEAR! HAPPY NEW YEAR!
Trust in the Lord with all your heart, and do not lean on your own understanding. In all your ways acknowledge him, and he will make straight your pasts. Proverbs 3:5-6
Ashley is warrior of the month for August. Sadly, she had to have surgery for the Fibrous Dysplasia on the first of August. As you imagine, the recovery has been rough but she's pushing through it like the warrior she is with the FD community right by her side rooting her on! So keep her in your thoughts, prayers, and send some positive vibes! We admire your strength and courage! Fight on FD Warrior!
Every month we are going to recognize a fibrous dysplasia warrior that shows passion, determination, optimism. and really knows how to support other FD warriors.
The article below was written by a TRUE FD warrior. She will help you with any problem before helping herself. I have never once see her complain about her FD. She's like everyones big sister and that deserves to be recognized, She gives me hope. Sheridan, is June's warrior of the month.
This warrior has taken Warrior of the Month for THREE consecutive months!
October's, November's and December's Warrior of the Month Is Pamela.
This warrior sits very close to all of our hearts, she is the "Always will be there for you" no matter what kind of person EVEN if her life is twisted upside down. Some people battle their FD/MAS with sorrow, anger and loss of faith but not her. She's one of the most helpful. caring and determined people I've ever seen fight this disease. She had surgery at the end of August, which left her with some complications which led to another surgery and some hurtles. 2015 wasn't her year but you would NEVER know just by talking to her. She has not given up hope and even when other's are down and she has every right to feel sorry for herself and have an off day but she doesn't. She fights through and she's taught me and many others that never giving up makes your weaknesses afraid of your strengths. She deserves to be acknowledged for the WARRIOR that she is. Oh and did I mention that she doesn't let her "complications" stop her from doing anything?! I want her super hero powers! And she does have two of the most perfect "munchies" I've ever seen!
March's Warrior of the Month
Goes to 5 year old
Jack and his family,
July's warrior of the month is Miss Kaylie Hill.
I met this beautiful girl while at work at Buffalo Wild Wings! She will going to LA, California in July for the Miss Amazing Preteen Pageant! She's gone through quite a battle with Spastic Cerebral Palsy Diplegia! But let me tell you she smiled all night while I saw her at work! Show her some love and Visit her website to see her whole story!
Spread the awareness and even through she's not an #FDwarrior I'm putting her as warrior of the month because she is her own kind of warrior and I look up to her!
Bethany gets to end the year with Warrior of the month for more reasons then one. Over the years that I've just known her, she has consistently maintained the happy, bubbly personality that most of us dream of having. She conquers any and every obstacle that is thrown her way and I don't know about you but if that doesn't deserve some recognition then I don't know what does. She's always willing to listen and lend a shoulder to cry on.
Emmaleigh has been my best friend since the day she was born. Emma has always been my rock even when she shouldn't have had to be and I believe she deserves to be recognized for that. I think it's important for everyone that has any illness to understand that they aren't the only one affected by their disease. It affects everyone who is in your life. Everyone is so proud of you Emmaleigh! Keep reaching for the stars princess!
Warrior of the Month
"Beauty begins the moment you decide to be yourself"
August and September's Warrior of the month is Skye.
Skye has undergone two intense FD surgeries in the past two years and in between the two has become a mother of a beautiful baby boy. Everyday she amazes people, inspires them with her strength and courage. Its a rare occasion to see this girl with a frown on her face. She will do almost anything to see you smile and she succeeds every time.
Lauren takes the warrior of the month award for 4 consecutive months which is the longest standing we've had in the FD community so far. Lauren deserves this for about a billion reasons but I will enlighten you on a few. Not only does she shine at everything she does but she shines light into every single person's heart that she comes into contact with. She's a writer, a designer, but along side of that she is the VP of the Fibrous Dysplasia Foundation. She's met with many patients of FD/MAS and has recently produced a video to raise awareness for Fibrous Dysplasia and McCune-Albright Syndrome which is a must see! True inspiration comes in the rarest forms.
Rylan never ceases to amaze us between his bubbly personality, the way he's always smiling no matter what is goin on his life to how many people's lives he's impacted with his music and how he raises awareness. That's the kind of warrior that we all need in our lives. Check out his facebook to see for yourself!! Fight on Rylan! We are all rooting for you!
9 Reasons Why I Hate About Fibrous Dysplasia
1. IT DOES NOT DISCRIMINATE:
Fibrous Dysplasia can affect ANYBODY. It definitely does not discriminate. You can be the most popular girl in the school, the geeky maths brain with a heart of gold, the single mother raising three children on her own; it does not matter who you are, what you do, whether you are male, female, whatever your religion, culture, ethnicity, sexuality: FD doesn't care. A beautiful young mother of two who champions for the cause, a happily married primary school teacher and mother of one, a young bride who is expecting her first child this year; each of these beautiful individuals, among my nearest and dearest, live day in and day out with the pain and suffering commonly associated with Fibrous Dysplasia.
2. IT DOES TAKE HOSTAGES:
As much as I'd love to say otherwise, Fibrous Dysplasia takes hostages: it will hold your life for ransom, it will steal your sanity, your dignity, your ability to be you! It will render you unable to walk, it will rob you of sight and hearing, it will make you faint at the most inconvenient and embarrassing of times, it will give you shooting pain in the middle of an important exam, it will make you fear waking up each morning. For the past five years, I have watched FD leave my family colour blind, deaf in one ear, confined to a wheelchair and walking frame, left with more scars than one can possibly count. It can and will hurt.
3. IT STRIKES WHEN YOU LESS EXPECT IT:
Heavily pregnant? About to see a sibling off overseas? About to celebrate a birthday? About to graduate from high school? Pfft, let FD creep in and steal these precious moments from you and leave you rattled, depressed and constantly anxious. It's what FD does best: strike at what should be joyous and positive moments in your life, and transform these moments into ones that you will NEVER forget, but for all the wrong reasons.
4. IT WILL SCARE YOU HALF TO DEATH:
Imagine a blissful moment in life; say you've just discovered you are pregnant. Now, pretend, even just for a second, that a vaginal birth might leave you with broken bones, shattered bones, in plaster for months on end. I am almost betting my life that you cannot begin to imagine such a fate. Once again, I have seen FD do this to the most innocent and beautiful of young women who are left in tears day in and day out because nobody understands what they are going through. Such a precious, special time is left with a poor woman so full of fear and terror, and feeling so lost. It's a feeling you wouldn't wish on your worst enemy.
5. IT WILL TEST RELATIONSHIPS:
As much as I hate to say it, your parents will never understand. Nor will your siblings, your cousins, your best friend, your partner; it is a disease so hard to explain and a pain so hard to fathom unless you yourself have been there. I had a heated argument with a certain someone over it; I've seen, first hand, how much it can hurt to try to make someone understand when they've no idea and yes, sometimes you'll come across people who just don't care. It's trying to any relationship to support somebody when you don't understand what they are going through, what they are facing, and it can break even the strongest of people.
6. IT WILL MAKE YOU A TARGET:
As anyone teenager can tell you, being different makes you a target. Imagine requiring a wheelchair to move around school halls, missing weeks of school at a time to undergo major surgery, collapsing suddenly and unexpectedly in front of curious and gossipy peers. Imagine having to quit your job, spend your weekends curled up in bed whilst your friends are partying... it doesn't sound like fun, does it? When you don't fit in, when people don't understand who you, why you are that person, it makes you such an easy target for bullying because let's be frank: Fibrous Dysplasia sounds like a bit of a made-up disease. I've been told that, my friends have been told that, so surely it must be fact. Therefore, it's reason to make your life hell because you are unique, and in this instance, that uniqueness isn't something to be celebrated.
7. IT WILL BREAK EVEN THE STRONGEST OF SPIRITS:
It doesn't matter if you are a hulking bodybuilder, a member of your country's armed forces, a police officer, a teacher, a full time parent, whoever you are, Fibrous Dysplasia can and very often will break your spirit and crumple your heart. You might be a born fighter, the strongest of the strongest, the bravest of the bravest, the truest of the truest, but Fibrous Dysplasia can still tear you down and leave you feeling weak and desperate, praying for hope and courage. FD brings adversity, and with it, some of the strongest and most brave people I know have been reduced to tears countless times because the pain becomes much too much to handle.
8. IT WILL LIKELY BRING OTHER MEDICAL CONDITIONS:
Thyroid disease. Fibromyalgia. Cherubism. Paget's Disease. Sound like your idea of fun? Thought not! Although nobody has been able to identify exactly why, Fibrous Dysplasia is commonly co-occuring with a number of other medical conditions of the endocrine, pituitary and skeletal systems. So now let's double the pain, double to anxiety, double the frustration and welcome to the wonderful world of FD!
9. IT WILL MAKE EVERYDAY TASKS SEEM LIKE A MARATHON:
This would be great, if you were actually physically fit enough to run a marathon. 99% of people with Fibrous Dysplasia aren't capable of this feat, much less tasks such as running after children, climbing a ladder, jumping on a trampoline, even completing the laundry without risk of injury. It might sound horrid to work up a sweat doing housework but spare a thought for the person unable to carry a basket of laundry without fear of injury, unable to chase after their child without having to slow down and walk instead; even the most boring tasks now seem like a walk in the park compared to what some have to go through.
I know you're now all thinking that I am the true pessimist, a real life Negative Nelly who only sees the absolute worst in EVERY possible situation. So let me share one, not so little secret with you all, perhaps to change your perspective and end this on a slightly different note so you don't go away dragging your feet and feeling depressed.
FIBROUS DYSPLASIA has given me more than it has taken. Yes, I am one of the lucky ones, but I still have this disease, I've still got it. That said, without my diagnosis, I would never have welcomed another family into my life. Sure, we do not share DNA. Heck, we don't even share the same blood type, or the same features that might make us family. WHO CARES? We're family based on the fact we all live with this disease and we all fight for our cause.
Nowadays, the are more of you than I can count; oh, how your numbers have flourished since this time last year, and even though I've lost count, you're all among my nearest and dearest. Although over recent months I've sadly seen so many gut wrenching and heartbreaking posts that I felt compelled to compose this "essay", I wouldn't ask for my time again, no matter how much money I was offered.
To take away my diagnosis would be to take away the biggest part of me. I AM NOT MY DIAGNOSIS, but I am the friends and family I have meet, I am the courage, strength and determination they give me and I am the lessons they teach me. It sounds so horribly cliche, but I am nothing without these women, and I owe so very much to them. Each of you know who you are. Each of you know what you mean to me. Just in case you ever forget it: no words can ever hope to express my gratitude. You're the best friends a girl could possibly ask for.
Deanna is a mother and works on the board of the Fibrous Dysplasia Foundation. Though she does not have FD/MAS herself; she puts her heart and soul to the work she does for the foundation, patients that suffer from having Fibrous Dysplasia and McCune-Albright Syndrome. She is an excellent example of what of leader stands for and is someone I personally look up to. She put in so much work for the FD Patient Conference to be a success and needless to say the conference being a success is an understatement. She deserves the recognition for all the hard work she does every single day! Thank you for helping our voice be heard!