My Illness May Be Invisible, But I’m Not.

John 7:24 Do not judge by appearances, but judge with right judgment.

Being a teenager with an invisible illness is tough. I look perfectly fine on the outside. No one has any idea that I am sick unless I tell them, but I’m far from fine on the inside.

Having an invisible illness can be great when you go about life not looking like a typical sick person and no one knows the truth about your weak and damaged body. It’s when people learn about your illness that it gets worse. Trust me, I get it, it’s a hard concept to understand that someone who looks fine isn’t actually fine; but just because you can’t see it doesn’t mean it’s not there. Just because you can’t see my illness, doesn’t mean it isn’t real and doesn’t impact my daily life.

What you see on the outside is a beauty queen, a college student, a Tex-Mex fanatic, a proud and loving sister, daughter, girlfriend, and friend. What you don’t see are the medications I take in the morning so I can function half as well as the typical girl my age, the specific workout plan I have to follow to try to train my heart to work properly, the hours I have to lay in bed or sit on the floor in the bathroom fighting my debilitating nausea or the multiple doctors appointments I have scheduled every week.

And that’s okay because I don’t want you to see all of that. I want you to think I’m alright and strong, a fighter; but when you find out the truth, I want you to be my friend. I want you to be okay with not understanding how I may feel okay after eating a meal one day, but feel sick after a meal the next, or that I can’t always go out for social events because my body is too physically exhausted from trying to function. I’m not asking you to get it, I’m just asking you to accept it.

Last year, one of the people I considered my very best friend, didn’t accept the fact that she didn’t understand my invisible illness. Instead, she sent me the most hurtful and distressing text message I have ever received. It had many mean things written in it, but the most hurtful thing it read was, “Your illness is bullshit.” Those words have affected me every day since I got that message because it was the first time in my life someone hadn’t tried to understand.

I know that people don’t understand my invisible illness because I try my hardest to prevent it from affecting my life. And I will never expect someone to understand. I know that I do my best to maintain a “normal” life and strive to be recognized for my accomplishments outside of my illness. But that isn’t a reason to assume my illness isn’t real.

If you know that I am sick, please just acknowledge it and accept it. Be ok with the fact that I may look healthy on the outside, but my body is fighting to stay alive on the inside. Please know that I do my best to participate in as many regular activities as I can because I want to be a part of your life too. Just please don’t think my illness isn’t real, please don’t think I make it up for attention. Because if you lived a day in my life, you would know just how much I pray and wish I lived a regular life, like you.

I’m proud of my illness and I will never hide that it is a part of my life. I will continue to prove that my normal is just as good as your normal. I could never imagine a life without my illness because, without it, I wouldn’t be who I am today.

It may be invisible, but it is real. I may look fine, but I am not. My illness is a part of me, but it does not define me. I am so much more than my illness.

All I ask is that you accept me for who I am and how God made me. I’m not asking you to understand why He made me this way…because I don’t either. 

John 7:24 Do not judge by appearances, but judge with right judgment.

Behind the Smiles

“Rejoice in hope, be patient in tribulation, be constant in prayer.” (Romans 12:12)

Someone I hold close to my heart received some difficult news today and I was inspired to write about the unspoken and melancholy effects critical illnesses have on a patient.

While medical conditions cause severe emotional distress amongst family members, we sometimes forget to address the flood of emotions the patient is facing.

Coming from someone who fought for their life for 2 years, the array of emotions felt during an illness is overwhelming. The minute you get told your prognosis by your doctor, or in my case, unknown prognosis, you definitely go through the 5 stages of grief.

It starts with denial. It’s honestly hard to believe that you went from having a somewhat normal life to having a tube implanted for life support, intensive chemotherapy treatment to kill your cancer or even a time limit put on your life. Perhaps you woke up with a side ache, and that night you’re going to bed knowing you have a kidney disease. The news can be hard to comprehend, but eventually reality sets in.

The denial then turns to anger, but the anger usually doesn’t last long. It’s common to ask the question, “why me”? It’s understandable for a patient to lash out on family over little things, because inside they are trying to cope with the fact that their life is forever changed. Like I said, the anger doesn’t last long, because no one likes to be angry.

The anger transforms into bargaining, because the patient is racking their brain trying to decipher the reasoning for their situation. They feel helpless and vulnerable and want to have control over their life again, so they’ll question whether the outcome would be different if they had sought medical attention sooner or if the prognosis would be different if they got a second opinion. This is completely logical. It is tough to conceptualize the fact that you may no longer be seen as “Alex”, but rather “the sick girl”, “the girl with the tube in her nose”, “the girl in the wheelchair” or even “the girl that almost died”. But, when reality sinks in deeper, the bargaining stops.

The more and more you continue to live your life knowing you have a certain medical condition or in pain and discomfort, you simply get sad. I remember the numerous nights I sat in the hospital bed crying and crying until, literally, I had no tears left to cry. I was tired of fighting, I was tired of the hospital, I was tired of the endless examinations, IVs, vitals, ER trips and doctors. I wanted my bed, I wanted my dog, I wanted my family and I wanted my home. Home is where I felt comforted, it was familiar and it was a place I didn’t feel like a patient. I just felt like Alex, a daughter, sister, cousin and friend. But, you can’t pity yourself forever when you’re in these situations.

It doesn’t take long for patients to accept their condition and to live life with optimism and gratitude. It’s funny, because all the warriors fighting medical battles that I have met, always have a positive attitude and smile on their face. But, when I was in the hospital, my mom would get distressed when countless doctors would ask her, “Are you sure her illness isn’t self-inflicted? She doesn’t seems like a sick kid, she always is smiling, bubbly and laughing.” That was my way of coping; if I was going to spend all of my holidays for 2 years in a hospital room, then I was going to decorate my room, make friends with the nurses, take laps around the hospital with my IV pole and find unexplored avenues I hadn’t been through yet.

I wasn’t always an upbeat patient though, I definitely had my fair share of trials and defeats.

The day I got my feeding tube implanted, I had had an endoscope (a procedure where they stick a microscopic camera down your throat to take pictures of your digestive tract) earlier in the day. The endoscope tore my throat up and left it completely raw, exactly in the spot where my tube pressed against as it passed through to my intestines. The pain I felt that night from the pressure of the tube on my completely exposed throat was excruciating. I couldn’t talk or swallow (even my own spit) it hurt so bad, all I wanted to do was cry, but the minute I started to cry the pain got even worse. That was one of many moments I admitted defeat and wanted to give up my fight. But, deep down I knew I couldn’t stop fighting. The thought of letting my family down, relinquishing my fervent foundation of faith and giving up on myself fueled me to persevere.

My brother, who has been blessed with the gift of humor, used his jokes to his advantage. He learned through my illness, that he can use his humor to uplift others when they are down (he used to put his white computer charger into his nostril and wrap it behind his ear to have a tube like me while I Facetimed him from the hospital, which always made me laugh).

Being a typical 15 year old boy, he took my giant teddy bear and taped it above the sink and turned the faucet on. Of course, as juvinile humor does, I laughed and a smile grew across my face. I realized the amazing support system I had to pick me up when I fell down was worth far more than the pain I endured.

We have a smile on our face, we offer smiles and laughs to friends, family and strangers. We have a love for helping others and living life like everyone else. We handle our situations with grace and dignity, we DON’T give up. We may look okay, but everyday brings pain, trails, fear and sadness. BUT EVERYDAY, WE SMILE, WE LOVE, WE LAUGH AND WE REMEMBER…WE ARE FIGHTING THIS BATTLE FOR OURSELVES, OUR FAMILY, OUR FRIENDS AND OUR FUTURES. 

Behind these smiles are stories. Stories of tribulation, suffering, fear and uncertainty. 

“Rejoice in hope, be patient in tribulation, be constant in prayer.” (Romans 12:12)

The Man Behind the Scenes

In pageants, a common question I get asked is, “who is your role model?”

Of course, my parents are AMAZING and have set a great example of how a family should function, how a married couple should love and respect one another and how to navigate through the tough decisions of life.

BUT, there is another man in my life who I look up to and hold in the highest regards.

Markshane became part of my life, just about 2 years ago. At the end of June 2014, I met Markshane and he became my personal trainer. When I started with him, I had no muscle mass, had only been walking again for just under a year and weighed 96 pounds. You’re probably thinking to yourself, “how could someone you met 2 years ago be your role model? And what could your personal trainer have taught you that enables him to be so influential in your life?”

Well, Markshane is more than my personal trainer.

Markshane is the type of person that gives more than he takes. He grew up in a small town in Alabama, and an anonymous donor paid for him to receive a private education. Even to this day, Markshane has no idea who the donor was, but not a day goes by that he isn’t appreciative for that stranger’s act of kindness.

Every single day, Markshane greets everyone with a smile (me by picking me up and giving me a big hug & a kiss on the head), goes out of his way to go above and beyond for others and always has a positive attitude.

Of course, due to his appreciation for the anonymous donation to his education, he ensures that he is always paying it forward through big acts of kindness. But, what I admire most about him, are the small acts of kindness he carries out daily; simply out of love, with no expectation of compensation or reward.

Markshane and I got extremely close, extremely fast. Basically, he plays the role of a 2nd father figure to me, and I tend to feel like an adopted daughter of his own.

At every workout, Markshane would ask how school was going, about my friend life, about pageants, about who I was going on a date with that weekend…and he would remember every name and detail in every story. Better yet, he would go to my monumental school events, charity runs and pageants to support me. The best part is, he would wear purple, my favorite color, and we would wear matching outfits, to the last workout before a pageant. Furthermore, Markshane would sternly shake the hand of my dance dates, just to ensure they knew who the real man in my life, out of the 2 of them, was.

My favorite moment of millions of Markshane memories, was the night of senior prom. Markshane had comforted me when I didn’t think I was going to be asked, seen the dress I bought, smiled and listened to the long story of my prom-posal and patiently sat with me while I talked through all of my pre and post prom plans.

My phone rang 30 minutes before I was supposed to meet my date for pictures, and it was Markshane.

Markshane had called me just to tell me to have fun at my senior prom & that he was sure I looked beautiful and that he couldn’t wait to hear all about it.

Amongst other memories, of him at my high school graduation, our countless BJ’s lunch dates, him cheering louder than every person in the audience at my pageant & walking side by side at a charity 5K, our relationship today is stronger than ever.

When I left for college, Markshane and I were both reluctant to say goodbye. We saw each other at least 2 times a week, early morning and afternoons, we talked almost 5 days a week, and I could meet him for lunch whenever he had a free schedule. Now, with me being half way across the country, a phone call is the best thing we’ve got.

We talk every 2 weeks on the phone for about 30-40 minutes each call. We text intermittently in between calls to send pictures and updates on our lives and families.  We meet up for our regular BJ’s lunch whenever I am home for break and catch up on lost time.

By simply being present, Markshane imprints an enormous positive impact in my life. One he isn’t even aware he is making.

Markshane was the 3rd person I called after I got my first college acceptance, just after my parents and grandparents. He is the person I call when I’m crying and need a pick me up, or when I am excited about an accomplishment.

The thing is, Markshane is the most humble human being I have ever known. He shows his commitment to every individual in his life by unconditionally loving and accepting them for their authentic self. He genuinely cares and is interested in the lives of others and willingly sacrifices anything to ensure the happiness of someone else.

A 30-40 minute phone call every other week, a carved out 2 hour time frame for lunch dates, an hour drive to watch me walk on stage and compete; these are the little things he does for me. And these little things inspire me to strive to be as selfless and appreciative as he is.

Markshane, you have helped guide me to become an independent, confident, strong and appreciative young lady. You have demonstrated to me the importance of investing in others, sacrifice, diligence and self-respect; which in turn, has enabled me to become a better version of myself. You have encouraged me to stay true to myself and my values, even in a tough environment, like college. You’ve told me not to change because you love and are proud of the girl I am. You have sparked my love of giving back and serving others, whether they are less fortunate or just someone who needs a friend. You have pushed me to chase my dreams & accomplish the things I had set limitations on due to self-doubt. You have been a phenomenal example that actions speak louder than words & shown me that hard work, truly does pay off.  Thank you, for loving me, caring about me, investing in me, supporting me and inspiring me to strive to be a fraction of the admirable and exemplary person you are. 

Markshane’s integrity is shamelessly and flawlessly executed daily. He genuinely cares about my life away from home. Heck, he even made sure to thoroughly background check Danny (my current boyfriend) before giving his approval & he made sure to make it known that, Danny can take care of me in Texas, but in California, I’m all taken care of & all his.  (He still has to officially approve Danny in person this weekend at my pageant, though). He makes time to call me on holidays or call me immediately when I leave him a voicemail where you can’t understand a word I am saying because I am crying so hard.

Most of all, he values my life, my experiences and my endeavors just as his own.

He doesn’t have to call me every other week, or show up at my pageants, or even meet me for lunch dates. I pay him for his (amazing) service to help me stay fit; not to be my friend. But, that is just who he is. He is a kind-hearted, selfless, compassionate, accepting, loving person. He exercises his love for life, Christ & his wife and daughter, Savannah, every moment he is blessed with.

He is a person I am proud to say I know, proud to love, and proud to call my family.

 

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Markshane, Savannah & I at my graduation.

 

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The first time we coincidentally matched, head to toe, lead to a pre-pageant tradition!

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He drove over an hour at 7 am to walk a 5K with me!

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A year prior, I finished this walk with my feeding tube. This time, I finished with a crown & a man who means the world to me.

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My transformation from sick to fit, thanks to Markshane!

 

Miracle in Action

March 20th, 2014, my dad and I were wandering around Rady Children’s Hospital, taking my daily walk to regain my muscle strength. Just the day before, we had managed to walk for 30 minutes and end up at the underground connecting door between Rady Children’s & Scripps Hospital. What my dad and I thought to be a legendary and hysterical adventure, was my mom’s and nurse’s worst nightmare. But those types of stories are typical for my dad and I, wreaking havoc at the most inappropriate times.

March 20th, 2016, my dad and I embraced in a hug at the finish line of the Dallas Rock n’ Roll Half Marathon.

March 20th, 2016, marks 2 years of being a survivor of my rare, life-threatening illness. March 20th, 2016, signifies 2 years of laughs, memories, opportunities and friendships that were almost never experienced.

For my family, today is a day of celebration, a day of thanksgiving and a day of reminiscing on the multitude of emotions we experienced 2 years ago, today. It’s a day that we were never sure would come, but God willing, it did.

On Thanksgiving this past year, my dad and I decided that we wanted to run a half-marathon together on March 20th, as it would mark a day of joy and accomplishment. We agreed that in order to show our appreciation for my survival, we wanted to raise money for Children’s Miracle Network Hospitals around the nation, the organization that saved my life. So, I started a Go Fund Me, sent out emails, Facebook posts, and fundraised to raise money for a worthwhile cause.

I began fundraising in the beginning of January, and as of today, the end of my 2 year survival mark, I have raised $13,650!

$13,650!

The amazing thing about that money, is that it came from some family, friends, colleagues, and even strangers. It came from people far and near who read about my story and felt compelled to stand together to make a difference in the lives of children nationwide. Together, we all joined hands, to act as ‘A Rae of Hope’ with the goal of providing a child another chance at life.

The money that YOU donated and helped me raise, has the opportunity to save a child’s life. It has the chance to create another “March 20th,2014”, it has the chance to establish a day of survival, opportunity and memories. This money that we have raised together, can never be put into words, the effect it can have on someone’s life.

It is the moments of unknown miracles, that we create together, that save children’s lives and elicit smiles, hope and joy within families across the nation.

Thank you for your generous donations, unwavering support and unconditional love. None of what I accomplish today, could happen without you!

If you feel inclined to still donate & make a difference in the lives of terminally ill children, click the link below!

https://funds.gofundme.com/dashboard

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March 20, 2014

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March 20, 2016

Someone Like You

HOPE. A feeling of expectation and desire for a certain thing to happen.

My HOPE is to touch lives. 

Yesterday, my boyfriend, Danny, and I donated art supplies to patients at Cook Children’s Hospital in Fort Worth, TX (let me just mention how phenomenal and beautiful this hospital is! Danny even subconsciously referred to it as a hotel…that’s how nice it is).

As we were passing the front entrance of the hospital to drive home, Danny looked out the front window and said, “Look Al, that used to be you!” We watched a young girl wheel herself up to the entrance of the hospital, with a white tube taped on her face and thread through her nose. Looking at her, in that moment, felt as though I were watching myself in a mirror, 2 years prior.

After we both acknowledged our observation of the girl, Danny said something that I had never reflected on until yesterday. He looked me in the eyes, with the biggest smile on his face, grabbed my hand and said, “I am so proud of you! Look at all you have done for these kids! The money you’ve raised for these kids, goes to kids just like that girl, it goes to someone like you.” At this point I was already crying, because my heart was overfilled with joy; I had just seen a spitting image of myself, recognized how far I have come since that battle, and it was finally resonating with me that I was indeed, helping someone like me.

Over the past 6 months I have raised over $10,000 in total for Children’s Miracle Network Hospitals, benefiting pediatric hospitals all over the nation. I’ve met amazing kids with phenomenal stories, been given once in a life time opportunities to attend and speak at events and most of all, I’ve learned the importance of gratitude and appreciation.

Of course I know, in the back of my mind, that the money I raise is going to benefit the health of children all over the nation, just like I know that ‘A Rae of Hope Foundation’ will bring smiles to hospital rooms across the US.

But here’s what I didn’t know, until Danny said this, “Al, $10,000 in 6 months is amazing! Think of all the kids you’re helping! What if one of those kids were someone like you? What if one of those kids needs the experimental treatment like you did, and you helped give it to them? What if one of those kids is someone like you, and you help give them their life back? Your donations Al, can save a child’s life. It can help them get better so they can pursue an education, it can allow them to have the opportunity to get a job, get married and have a family. Al, someone like you, saved your life…and you’re doing the same thing for someone else.”

It is an overwhelming feeling to sit back and reflect on how blessed I am to be sitting at my dream college, pursuing a nursing degree, laughing with my best friend and FaceTiming my family from half way across the country. 2 years ago, none of that was even on the table. It was uncertain I would even make it to 18 years old, and if I did, the plan was for me to stay close to home and not go to college anywhere more than 20 miles away from the house. But, here I am, writing a blog post in the library of TCU sitting next to Danny, waiting for 9 pm to roll around so we can stop studying & go enjoy youth group.

I am a girl with passion. I am a girl with ambition and drive. I am a girl with a HOPE to better the world.

And I am this girl, because someone like me, gave me the chance to live this amazing and rewarding life. 

 

Donate to Children’s Miracle Network Hospitals HERE:

https://www.gofundme.com/8pa32kvw

https://www.booster.com/araeofhope?type=zoom&side=front

 

A Rae of Opportunity

I am beyond excited to announce my filing to have ‘A Rae of Hope Foundation’ incorporated as a nonprofit in the state of California!

“A Rae of Hope Foundation’ will create and deliver “superhero kits”, which include toys and activities, along with a superhero cape, designed to remind kids of the superheroes they are and encourage them during their battle.

When I was sick, people would always acknowledge the strength I had to fight, and even though I felt that I didn’t have any other choice, it empowered me to keep going.

It’s hard to be a kid when you’re sick, weak and stuck inside of a hospital bed with cords hooking you up to a machine. It’s hard to be a kid and miss out on quality family time, school and holiday festivities. Instead of enjoying the holiday of eating until you no longer can breathe and enjoying family company, I was having a NJ nasal feeding tube implanted through my nose into my small intestine, that hooked up to a pump to manually feed me for survival. That’s not how any child should spend their Thanksgiving, or let alone any day of the year, but that is the reality for millions of children across the world. But, one thing that make the days easier is play, because playing allows you to forget your illness and feel like a ‘kid’.

My goal is to hopefully, even for at least one minute, bring some extra joy into a child’s day and ensure that they know they are supported and that their strength is recognized and admired.

Of course, being 18, a full-time nursing student, pageant titleholder, self-proclaimed ‘movie critic’ (my boyfriend and I love watching movies and critiquing them, we probably watch about 4 or more a week…oops), AND now a President of my own nonprofit will be time consuming and exhausting. However, I am well aware of the challenges that this passion of mine imposes, and I recognize the dedication and diligence that is going to have to go into it, but I cannot sit back any longer with this desire in my heart to make a difference in the lives of others.

God blessed me with a difficult and arduous life, but a life that provides me pure satisfaction, joy, peace and gratitude. Through lots of prayer and reflection, I strongly believe He put me through my suffering for the benefit of other people. I have the opportunity to find strength in Him and follow His calling for me in allowing me to suffer in my health, for the joy of others. And strangely, I find peace and happiness in my pain and suffering because I am certain this is what He intended for my life.

My passion for helping children goes deeper than wanting a child to get better; to me, it is about bring even one more minute of happiness, one more smile, one more laugh or one more ‘Rae of Hope’ into these children’s lives.

Thank you for supporting me on my journey to live out my dreams and ambitions, absolutely none of what I have accomplished could have been done without your unwavering support.

If you would like to donate to Children’s Miracle Network Hospitals or view/purchase ‘A Rae of Hope’ customized and personally designed t-shirt, please click the links below!

Half Marathon Donations: https://www.gofundme.com/8pa32kvw

T-Shirt Purchases: https://www.booster.com/araeofhope?type=zoom&side=front

Motivation Behind The Title

January 30th, 2016 was an extremely emotional day for me. Not only was I privileged to win the title of Miss Teen Los Angeles County International, I won on my Grandma’s birthday.

Anyone that knows me, knows that I am extremely close with my family, especially with my grandparents. My grandma on my dad’s side has been battling Lymphoma for the past 3 years and was re-diagnosed this past Christmas with the more aggressive form. She recently started back up with chemo and is once again, exhibiting strength through all of her pain. Competing in this pageant was about more to me than winning the crown and sash, qualifying for states, or accomplishing my goals. It was about making my grandma proud, and winning at a pageant she was healthy enough to attend and watch.

When I decided to compete in this pageant, she told me, “I don’t care how sick I am or if I have to wear a mask over my face, I want to watch you compete. It is my goal and I will be there.” If that isn’t motivation in itself, I don’t know what is. I decided prior to the pageant that I would compete in her favorite dress of mine, one she had never see me compete in before. I didn’t tell her I was wearing it, so you could imagine how excited she was when I walked on stage for evening gown in the dress she adores. Let alone, an hour later, how thrilled she was watching her granddaughter be crowned in the very dress she has loved for over a year.

As soon as the show was over, pictures were taken and I could reunite with my family, my grandma could not stop saying, “this is the best birthday ever!”. She also told me that she was so exhausted that morning from the previous week of chemo that she almost didn’t come, but she had promised herself she was going to do it. Her smile strung from ear to ear and did not leave for the remainder of the night. My mom even texted me on Monday that when they checked her blood counts to run treatment, they came back perfect and she told everyone it was because of her “amazing weekend that she got to share with me and watch me win my pageant”, and in typical grandma fashion, continued to show everyone pictures of me competing on her phone.

Of course I am so thrilled to have won the title and am so excited about getting to continue to work with Children’s Miracle Network Hospitals and share my story with children around the Dallas- Fort Worth and Southern California area, but I thought in this post I would let y’all in on why winning last Saturday meant so much to me! In my family, pageants aren’t just for me, it is something that brings all of my family members together to celebrate something I’m passionate about and that fills me with joy.

Nothing is more rewarding than accomplishing something for a bigger purpose than yourself! I am so appreciative that God has blessed with with such an amazing and loving family whose happiness I get to put at the forefront of my life!

Donate HERE For My Half Marathon

March 19, 2016 will mark 2 years of recovery and weight gain from my illness. While each day of my recovery has been anything but easy, it has been a blessing. The past 2 years I have fell in love with fitness and health and worked extremely hard to put on muscle and healthy weight.

6 months ago I finally put on enough weight to start doing cardio and running. To celebrate 2 years recovery and my new gained fitness and health, I will be running my first half marathon alongside my dad. All proceeds will benefit Children’s Miracle Network, the foundation that helped save my life.

I am extremely grateful for this opportunity and am asking for your help to donate to the foundation that saved my life. There are many other kids fighting for their life, just like I fought for mine, and without Children’s Miracle Network of Rady Children’s Hospitals nationwide, many of us would not be here today. Please consider supporting me on this next step of my journey.

DONATE HERE: https://www.gofundme.com/8pa32kvw

 

From Illness to Pageantry

As soon as I recovered from my illness, I had to put on weight. I weighed 95 pounds and my bones were protruding from my chest and I was extremely insecure about my body. I decided to start training with a personal trainer to put healthy weight and muscle on my body. I wanted to work with someone who understood what I had been through and could work individually with my needs.

At the same time of my recovery, a teacher from school suggested that I get into pageantry since I have a passion for helping others and enjoy public speaking. I knew I wanted to do something with my story and pageantry gave me the perfect avenue to use it to my advantage.

I competed in my first pageant 2 months after my recovery and made top 20 for the state and won Miss Photogenic, earning a $1,000 scholarship. I then continued to compete in Miss Greater San Diego Teen USA where I placed 1st runner-up, to my now best friend, Caitlin. A month later I was crowned the inaugural Miss Newport Coast Teen USA 2015 and advanced on to compete for Miss California Teen USA, placing in the top 20. I then competed in Miss Texas Teen USA 2016, and will be competing for Miss Los Angeles County Teen International at the end of January.

My platform I promote through pageantry is helping children suffering from life-threatening illnesses and being an advocate for health, well-being and never giving up. More specifically, I support Children’s Miracle Network for the Rady Children’s Hospitals around the nation. My goals are to share my story to spread positivity and hope and raise money to enable the hospital to continue providing the best care possible. I also enjoy visiting the patients and giving the kids super hero capes, so that they know they are heroes and capable of fighting any battle. Lastly, my ultimate goal for this year is to run my first half marathon in Dallas on March 19th, benefiting Children’s Miracle Network. March 19th will mark my own 2 year recovery from my illness and I hope to set an example for others, demonstrating the importance of a healthy lifestyle. Ultimately, I would love to run more half marathons around the country, all benefiting Children’s Miracle Network.

My Story

In October of 2012, I was admitted to Rady Children’s Hospital San Diego for severe headaches. When I was being discharged, I started to have leg tremors and the doctors attributed it to atrophy from laying in the hospital bed. After being discharged, my leg tremors worsened and I could hardly walk 10 feet by myself or before I got winded. I was consistantly in and out of the hospital for 6 months and I was in a wheelchair for most of my sophomore year of high school. While I was unable to walk I underwent every single medical test possible to find out what was wrong with me, but no doctor could find an answer. While I was trying to regain my ability to walk, I started having trouble digesting food. As I began walking again, I started throwing up everything I ate or drank, including water. Doctors ran every test possible, but could not find an answer as to why I was rapidly losing weight and adapting an intolerance to food and water. Right before thanksgiving of 2013, I was hopsitalized for fluids and was told I would be discharged before thanksgiving and be celebrating with my family. I had lost 4 pounds in 3 days and there was no hope of being discharged anytime soon. I got a NJ nasal feeding tube implanted, that ran from my small intestine up through my nose and hooked up to a tube to manually feed me for survival. I had the tube for about 5 months, and while I was on the tube, I continuously lost weight and my liver and heart were beginning to fail. February of 2014, I was told I would “most likely never recover” and I was “a very rare case, one of the only they had ever seen”. I was scheduled to get a permanent feeding tube surgically implanted into my stomach. I would be 16 years old and never enjoy a peanut butter and jelly sandwhich again, I couldn’t buy normal clothes or a beautiful prom dress, I would have to have a hole cut through my clothes to make my tube and pump easily accessible. My surgery was scheduled for February 14, 2014, Valentine’s Day. The day before surgery, my gastro doctor, Dr. Cherry, called my mom and said she had called numerous specialists around the US to discuss my results and there was one experimental treatment they could try to help me recover. My surgery was canceled and I endured 2 weeks of inpatient treatment that had never been practiced on any one with my case at the Rady Children’s in San Diego. I worked with numerous specialists during that week, attended sessions in the eating disorder wing to help conquer my fear of eating food, with the fear that I wouldn’t be able to keep food down, practiced biofeedback and slowly worked my way from a cup of water to a peanut butter and jelly sandwhich. Although it took me 2 hours to eat a sandwhich by the end of my 2nd week of treatment, I was able to eat again. Rady Children’s helped give me my life back and now I am able to attend Texas Christian University to pursue a nursing degree. I am able to compete in beauty pageants and have held the title of Miss Newport Coast Teen USA. Rady Children’s has supported me endessly and made me a part of their family. Please join me in helping to support the sick children that are fighting for their lives, as I speak for surviviors and those who have passed, Rady Children’s has provided us with phenomenal medical care and love throughout our battles.