Funding for Life and Purpose

Dear Reader,

My life has been a roller coaster of ups and downs, but one thing that has always been consistent(even when I had to miss some); my education. I was diagnosed with Systemic Juvenile Rheumatoid Arthritis when I was just six months old. Many people believe that arthritis only affects the joints, but the reality is, it affects your whole world.

My arthritis has not only affected my joints, but also my organs, and mentality of life. When I was ten I was two weeks away from having a stem cell transplant when my life was turned upside down. I had developed sepsis. I ended up being a coma for two months and rehabilitation for another two. Sepsis caused my toes and left fingertips to be necrotic, making them turn blue and fall off, all in a span of a year. While I was in a coma the doctors ended up doing an exploratory surgery on my abdomen to see if they could find the cause of sepsis. An early removal of staples caused my abdomen to reopen and become infected. I ended up having a wound VAC on for a year to close the wound. During the span of 1-3 years of recuperating I went to school trying my hardest to be at school as much as possible.

I promised myself that no matter what I would finish school trying my hardest. I believed, no matter what it took I was determined to earn a degree, whether that would be a meteorologist, doctor, child life specialist, or a photographer.  I had a dream and I was going to make it a reality! Middle school was a very hard time for me socially and mentally. I pushed through it with all my might, I just kept saying only 7, 6, and 5 more years till I’ll be a senior. I went to school even while I was healing from a total hip replacement. I was on so much pain medicine that I was driving into walls, and a full day at school became unsafe. So, again I was stuck at home when all I wanted was to be at school learning.

In high school, I once again had to conquer complications from my arthritis and my weaker immune system. My freshman year I had eight ear infections. I kept being put on antibiotics, oral than IV. I was going to school with a needle and a tube stuck out of my chest, but I was still determined. In the spring of that year I had a mastoidectomy. When the surgeons went to take it out they found that the infection had ate through my skull and I had cerebral spinal fluid leaking out of my ears. This put me on bed rest for two weeks where i had to lay flat. Though I persevered my way through high school, I still ended up missing a half of the school year. Even though I had As and Bs a couple Cs that year I was failed in two of my classes. I eventually made those classes up in summer school. I still feel as though, it was unjust to give me those since I was not given the same opportunities to keep up my grade. The rest of my high school career I knew I had to work extra hard. By the time I graduated in 2016 I had earned a 2.9 GPA and a spotlight student. I finally did it! Despite all the obstacles, I was able to get into my number one school; Edgewood College in Madison, Wisconsin.

At Edgewood I met many new people but felt secluded. I was even discriminated against by a teacher and not given the same opportunity of other students which affected my grade. I was five hours away from home. Every week my mom had to drive back and forth, sometimes in 24-hours for me to be able to get my 6 hour treatments for my arthritis or to spend one on one time helping and caretaking. The campus was really hard for me to get around on.

In the spring my family experienced a tremendous loss of my grandfather, as he was my step father’s employer his death was felt in multiple dimensions.  Even though I had successfully earned a 3.2 GPA, all the harder life situations had me thinking, my family needed me closer and I was ready for an different college experience. I had came to the conclusion that I would like to transfer to the University of Minnesota-Twin cities for my Sophomore year of College.

Than of course, life throws another challenge for me. Money. At the end of June we found out I could not apply to the University of Minnesota-Twin cities because of a financial mistake early in the year by my school, I now owed over $5,500 to Edgewood. I can not work, my mom earns a unlivable wage as my PCA, and due to the major death in the family we were already not financially well. I decided I would take off the fall of 2017 so we could figure out what to do.

Another bend in the river, in the fall I found out I needed an ankle fusion in January and the another after that is healed. Still unable to pull together the cash I need to get my transcripts released and with the fusion, I now had to take off the spring of 2018. With a plan, my specialists and I have figured out how to get me better off physically to start at the U of M in the fall. I am excited to have a new chance to experience college with more physical ability or at least less pain. I have risen to the challenge over and over. I have proved with ultimate strength and courage that I am able to meet my goals with complete and utter determination.

I am asking for help. I still need to find the money to pay back Edgewood, so I can apply for the University of Minnesota-Twin cities and pursue my education in Graphic Design. I am asking for your financial support in helping myself to realize a very possible dream and goal, earning my degree in Graphic Design. With your support I can give back to our communities in one of the most beautiful ways, capturing life moments in my personal perspective of photo artistry. My ambition is to support many organizations who give back to others, such as the Arthritis Foundation, and in doing so live the life I have been fighting for all along, a life of purpose. PLEASE DONATE. THE DEADLINE DUE DATE FOR THE APPLICATION IS JUNE 1ST.


Arrian Madden an aspiring Graphic Designer.img_0675


Disability Discrimination

imageGale Encyclopedia of American Law Americans with Disabilities Act (ADA) is a milestone for those with a disability. The ADA has been called “Bill Of Rights” for people with disabilities. About 20 percent of the U.S. population is disabled. The author of Associated Press article Disability Discrimination Claims Agency’s Agenda, Jennifer McDermott says the commission received more disability discrimination claims than sex, race, or age since early 1990s. I believe there is discrimination against people with disabilities in the workplace, schools, and in public. For disabled people it is very hard to find the right workplace, education, and accommodations. First, discrimination in the work place.

According to an article in The Associated Press a woman in Mankato Minnesota Laurie Goodnough is suing her former employment Baywood Home Care. Goodnough is suing because she was discriminated against and fired for being seen walking around with a cane and complaining. Goodnough has Fibromyalgia and Osteoarthritis these diseases limit her ability to walk and bend easily. The walking aid gives Goodnough her ability to bend and walk more easily. The problem with this is that Goodnough was an employee at the company since 2007. She was a good employee, but when other employees saw her with the cane they told the manager. She was doing exactly what she needed and did not do a poor job while working. According to an article Jennifer McDermott states that some employers do not know how to make accommodations, for employees with disabilities or even know what qualifies as a disability.  Other case also says that some employers are not hiring, promoting someone, or firing the employee, because of disability. Now you may ask your self, “How has the problem been solved before?”

Imagine you are put into a cage and you have autism, imagine how scared you are. This happened to an autistic boy. A report from ABC Premium News Federal Opposition Backs Calls for National Inquiry into Education An article called Disability Rights in Civil Rights in the United States says that the disability rights movement is still new with the civil rights movement. The movement reflects recognition that features contemporary society (physical and social) have worked, sometimes not meaning to, restrict rights and opportunities of those with disabilities. An article from Gale Encyclopedia of American law says the ADA is a law that is made up of five titles. The first title says that employers are not allowed to discriminate that are able to screen out people with disabilities or standards that have an effect against the person. The second title is that public services must be able towards disabilities. The third says that private business that provides accommodations cannot discriminate. The fourth title is that telecommunication companies cannot discriminate against people with disabilities. The fifth tile consist technical and miscellaneous provisions.  The ADA is what protects disabled americans from discrimination, yet it is still happening. Now what do we do with the children that have disabilities?

of Children with Disabilities After ACT Cage Incident. The ACT case is that a child with autism was put into two-meter by two-meter cage like structure made by pool fencing. Mr. Innes who deals with cases like ACT case says that “I think that the key issues here are both the lack of resources for schools and training for teachers, and just lack of awareness of teachers who might think that such actions are appropriate.” I believe that every teacher and student or class mate needs to be educated on the subject of disabilities of the person.

An article in Education: Meeting America’s Needs? Education for Special Needs Students says that in 1992 an act called Education for All Handicapped Children Act was renamed Individuals with Disabilities Education Act (IDEA).  IDEA was renamed and redefined in 2004. Terms added to IDEA are mental retardation, hearing impairments including deafness, speech or language impairments, visual impairments, and also including blindness. Other terms are serious emotional disturbance, orthopedic impairments, autism, traumatic brain injury, and other health impairments, or specific learning impairments.  Now you maybe asking yourself, “Is this what children need”?

An article in Gale Encyclopedia of American Law Disability Discrimination says, there is a law that was made in 1975, studies showed that more than half of all disabled children was not receiving appropriate public education. About one eight of those children was left out of public education all together. In 2006, over six million children had received special education because of IDEA. According to Gale Encyclopedia of American Law Disability Discrimination each child is covered by IDEA and is entitled to Individualized Educational Program (IEP). The IEP is developed by the parents, teachers, and doctors. IEPs identify the abilities and needs of the child. It outlines educational placement and services that address the needs. Today we have discussed discrimination of people and children with disabilities.

As you can see people with disabilities are discriminated against a lot in the workplace, school/education, and in public. People with disabilities are discriminated against a lot in the workplace, school/education, and in public. Twenty percent of the U.S. citizens have a disability of some sort. I urge all of you here today, not only think about discrimination, but think about who is being discriminated against, and where that is. If you see a disabled person being discriminated against let them know you support them, and let someone know about the situation.

Making Hospitals A Better Place For Kids

“A hospital can be a scary place. Help kids cope with stress and uncertainty is what child life specialists do. They asses needs and explain what is about to happen, using age-appropriate language and medial play. They calm fearful patients with relaxation and distraction techniques. Soon that scary place isn’t so scary anymore.”-Unknown

Imagine being ten and having a mom, dad, and three brothers under the age of nine. Then imagine yourself being very sick. Imagine that your toes and fingertips are falling off from necrosis, having an open wound the size of your hand on your stomach, and not having anyone there to help you and your family through this difficult time. A child life specialist is a pediatric health care professional who works with children and families in hospitals and various outpatient settings to help them cope with the challenges of hospitalization, illness, and disability. During this time the child life specialist could not help my family and me. That being said I have put my all into my future of becoming a child life specialist. I want to be there for them. I want to help children and their families the way that the child life specialist couldn’t for us.

   Child life specialists have been there for me when I was in the hospital and needed them. I became close with some of them, but sadly, not all of them.  When I was very sick and dying, the child life specialist was unable (possibly due to a lack of experience) to explain to me or my family about what was going on. The child life specialist was educated i.e. book smart however in the empathy department our needs were unmet as a family and as a patient.  Someone with similar experience could have provided what we desperately needed. Someone who understood the pain what my family was experiencing. Many child life specialists do not yet have the life experiences that would enable them be able to put themselves in their patients’ shoes. All the training in the world will not prepare them the same as having the life experience of being a child with a compromising health condition. They will always be there but the field of child life specialist is in need of more people with real life experiences of childhood traumatic illnesses.


I figured that I wanted to become a child life specialist at the young age of ten. I knew from a young age that I wanted to help children with health problems such as a pediatric rheumatologist, but that was too much school.  To become a child life specialist you need to have a baccalaureate degree which is four years of college. The idea of becoming a child life specialist had struck me because I have been sick for a long time that I knew I would help them. A child life specialist isn’t like a social worker or a doctor. They are someone who you can learn from and play with. They help relieve the stress that may be burden sick patient and family. Child life can help with explaining medical procedures and helping them understand what will happen. They can also travel to the patient’s school and explain to the classmates and teachers about what will happen at a level that is appropriate for children. They can also teach the patients and families skills that will help the, cope with the illness. After all I have had a traumatic illness since I was a baby, and grew up with three younger brothers. In my opinion I will be able to make child life specialist a better field just because I have been in the shoes of someone who has been ill. Many people will not be able to put themselves in that type of situation, but I will because I have been in that situation. Even though I can’t tell how the process of having someone with an illness was for my parents, brothers, friends, or loved ones affected them they have told me stories about how it affected them and I will be ready if that situation comes up for the patient and me. I hope the children will look up and trust me more because they and I have gone through similar circumstances. They will be able to look at me and be able to tell that I have had an illness. I know that my height will help them be able to trust me better than someone who is taller because they will think of me as their friend instead of someone who is trying to hurt them. I hope that I will be capable to help children with traumatic illness feel more comfortable in the hospital.


As you can see that my reasons for becoming a child life specialist is beyond a job or a chore for me. As I finish I leave this quote for you by B.J. Seabury “I’m not a therapist. Play isn’t just diagnosis or therapy. It’s these children’s right and their need.” It is my passion to help children feel more comfortable in the hospital I believe that I will be able to help my patient and their families more than someone else can just because I have been in their shoes. A child life did a lot for me, but they had a lack of experience that would have helped us to know that everything was going to be alright. I know my patients will feel more comfortable around me just because they will be able to trust me more and do have experience per say someone that is tall and does not understand what they are going through.

Needing More Love and Support

Pretending to be happy when you’re in pain is just an example of how strong you are as a

Many people have stress whether it be from their job, school, health, or kids. I know when it comes to me I am most stressed when it comes to my pain/health and school. I try to be at school as much as I can but when I am in pain it is hard to focus. Most of the time when I’m at school and in pain I push the pain to the back of my mind. I know I have to be at school as much as i can but it is hard when your pain level is always at a five or above.

When it comes to my pain I try to focus on something else. Whether it be someone talking, doing school work, or reading. I also like to do breathing meditation in class if I’m in pain. Most people can’t tell I am in pain or meditating. Most times I just take really deep breaths. I also like to tune people out so I will plug in my jams and start reading if I have no work.

When struggling with stress my anxiety also comes with it. I get anxiety attacks when i am in large groups of people. I try to bypass large groups of people. I will leave class early so I can skirt passed the crowd. I can’t go to amusement parks, malls, or anywhere with large groups because I know I will start to panic.

I also used to struggle with depression. Depression is also a side effect of many disabilities including arthritis. Yes I was or am one of those people who struggle with Depression. When I was in middle school depression hit me the most. I would miss school on purpose or skip lunch because I felt no one was there for me. I would sleep all day when I was home. I didn’t want to be around my friends or family. My depression still comes and goes but it is under control. I am much happier than how I used to be.

Too release some of my stress or pain when i get home. I will take a bath, use a heating pad, or ice. I listen to music and read books most often. People would call a bookworm if they knew the amount of reading I do. In reality I takes me into my own fantasy land. where I can be anywhere and anyone I want.

Things That Goes Unnoticed

Arrian Angels

No family is perfect… we argue we fight. We even stop talking to each other at times, but in the end, family is family…the love will always be there. found on

In my life there is a lot that goes unnoticed. I don’t want to talk about what goes unnoticed in my life, but in my family’s life. My life as well as my family’s life has not always been easy. I have always been told how much courage and strength I have, but it is not me who has the most strength it is my family that does.

My family are the ones who gives me the courage and strength to continue with my life. My family had to give up many things that a normal family can do such as go to an amusement park because of me. My younger brothers had to watch their older sister almost…

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Some Encouragements

Doctor Martin Luther King, Jr. said If you can’t fly, then run, if you can’t run, then walk, if you can’t walk, then crawl, but whatever you do you have to keep moving forwards.

I am 19 and have had Systematic JRA (Juvenile Rheumatoid Arthritis) since I was six months old. I am involved with the arthritis foundation, hospitals, and volunteering at school. My life has been a series of ups and downs. My arthritis at most times have been crippling. From needing to be carried around when I was 5 by my mom, teachers, and friends or being pushed in a wheelchair/Stroller. When I was in 3rd I got a scooter where I had more freedom. But no freedom from pain. I have been taking medicine for my JA before I can even remember. I started biologics at 18 months such as methotrexate and Remicade, but nothing has worked.

Right now I am on a 5 prescriptions a day. I have been on IVIG(IntraVenous ImmunoGlobulin) For about 6 years per once a month, this helps keep my arthritis under control, but doesn’t keep the pain away. Of course like anyone with an auto immune disease, I’ve been on steroids all my life which had also given me troubles. I have 3 brothers and they beg me to go outside and play with them, but most of the time I have too tell them I’m too sick or too sore to go play with them, when I see their faces when I tell them it breaks my heart.

When I was 10 years old I went into septic shock I was in a coma for 2 months and rehab another 2 months. Septic shock caused me too lose my fingertips on my left hand and my toes. The summer I was going into 6th grade I went to camp MASH where I met people just like me they became my best friends, I have been going to camp MASH annually for 6 years. When I was 13 I had my left hip replaced which caused me to have unbearable pain for 6 months – a year. I did not have rehabilitations for my hip replacement. I had to go to school on a cocktail of pain medications after I had my replacement causing me to swerve into walls with my scooter (that was LOL funny). Let me tell you though, even after all that pain I wouldn’t not have done the replacement because my hip feels so much better and I can do so many things that couldn’t before. Freshman year of high school I had 8 ear infections in a year so I had a Mastoidectomy. The doctors found out the ear infection had ate through my skull I was on bed rest for a year. All of that caused me to fail 2 classes from being gone.

Now, I am an A student. I have a GPA of 3.2 and am looking forward to going to college to become a child life specialist at Edgewood college in Wisconsin. Which I am proud to say I have been accepted into and will be going to in August! My health is better than it used to be. I am walking regularly. I don’t have to use a wheelchair or a scooter at school anymore. I have less infections than I did in the past. Though I can not do normal day activities like a person with out a disability could. I adapt normal day activities to my standards so I can do them. Through all the struggle my family and friends have stuck by my side the entire time. I’m so thankful for my family and friends. If I wouldn’t have had them through my struggles or pushing me to get it done I don’t know where I would be today. I may not have been able to walk, go to school or may not even be alive. I wish for everyone who reads this to have the courage I did. Please do not give up. Have strength to live.