Tag Archives: Joey Holt

Should Your Child Take AP Courses in High School?

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I should have probably written this last spring before all of Joey’s friends started signing up for their freshman classes but hey, better late than never. I’m not an expert in scheduling or a guidance counselor but I do have two step-sons in college (Josh and Joel), a high school senior (Andi) and a high school freshman. I have been through the college application and financial aid process with Joel, high school scheduling/AP classes/GPA process with Andi and now it’s Joey’s turn.

With school starting tomorrow, many kids are posting their schedules and asking who has classes with them. Joey is still in Germany ( a post to come soon) but I am discovering that very few kids are in the same classes as Joey. Why might that be?  It is because Joey is not taking early bird or AP classes.

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Our high school pushes taking both of those things. AP classes are college level courses that students can take in high school. They do cost extra, but less than what it costs in college. However, you have to get a certain score on the final exam to get the college credit and not all colleges accept those credits. Early bird students take an additional course at 7 a.m., instead of starting their day at 8. That means we have 14-year-old kids taking seven classes and college courses. Neither of my children are morning people so early bird wasn’t even an option in my house. However, taking AP courses was.

Andi had always been a strong student with a good GPA. She was placed in higher level courses and chose to take the AP level classes that were offered. It didn’t go quite as planned her sophomore year. She suddenly found herself struggling in English and history (both AP courses), which had never been an issue before. She wasn’t the only one. Several of her classmates received much lower grades than they were used to and didn’t receive college credit. We were convinced that this was because 10th grade is a difficult year, they hadn’t taken so many AP courses before, etc. So we decided to continue with the AP track her junior year. And found ourselves, like many others, in the same situation. Halfway through her junior year I had wished that we had done things differently.

Some will tell you that colleges want to see that you took AP classes before considering scholarships or admission. This is true to an extent. Competitive colleges (Yale, Harvard, Stanford, etc) want to see that you took these courses and did well. But I will tell you that Joel was accepted to every college he applied for – University of Kentucky, Eastern Kentucky University, Morehead and the University of Louisville – and none of them cared that he didn’t take AP classes or early bird. They wanted to know his GPA and ACT score. That is all that really mattered.

Andi’s high school years would have been a lot less stressful if she would have skipped some of the AP courses. Her GPA would be much higher (it’s not bad) if she would have taken more regular-level high school classes. A higher GPA would mean more opportunities for scholarships. And believe me, you want more opportunities for scholarships.

Andi is going to take AP Spanish her senior year because she plans to minor in Spanish and having the basic level course out of the way will be helpful. But other than that, she is taking regular classes. She will take regular English, math, science, art and computer tech. She will enjoy her senior year and hopefully boost her GPA a little. But I’ll tell you a secret… Colleges are really looking at your GPA as of your junior year because you will apply in the fall of your senior year.

So we decided to take a different approach with Joey. He can take AP classes if he wants but we won’t push it. I would much rather him take classes that challenge him and allow him to focus on a higher GPA than take classes that are going to cause extra stress and might not even transfer to the college he chooses. Since Andi and Joey attend the best school district in the state of Kentucky, even the regular courses are challenging. He is taking PE/Health, Principles of Engineering, Spanish 2, English 1, Alegebra 1 and Intro to Physics. There are no AP classes or early bird on that list but I don’t expect him to be bored.

goofballs

Joel, Andi & Joey – They are all goofballs but unique in their own way

We all want our kids to succeed but we have to remember that they are 14 to 18 years old. They will be stressed in college as many of them figure out how to pay for undergrad, work at least a part-time job and go to school full-time. Expecting every student to suceed in college courses at the age of 14 is unrealistic. Pushing seven classes on them in addition to school plays, sports teams, homework, circus (my son works with Circus Mojo), part-time jobs and a well-rounded social life is also unrealistic for many.

I know it’s hard to say no to AP and extra courses when the school administrators are pushing so hard to do it all but I suggest that you and your child make the best decision for your student. What’s best for one of your children, might not be best for your other children. I do send big kudos to all the kids who succeed in early bird and AP courses, just remember, it’s not for everyone.

 

 

Running off with the Circus

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Joey Holt, a 14-year-old Fort Thomas resident who is an 8th grader at Highlands Middle School, is running off to Germany with the circus this summer. My son Joey really is an extraordinary kid who has defeated a rare disease called Langerhans Cell Histiocytosis. The cancer attacked his hip bone causing him to need a bone graft and making doctors wonder if he would ever walk again. After months in a wheelchair, years of physical and occupational therapy and counseling for Post-Traumatic Stress Disorder, not only can Joey walk, he can perform in a German Wheel and do tricks on a cable wheel.

joey german wheel2

Joey met Paul Miller, owner of Circus Mojo, and some of his team at Cincinnati Children’s Hospital while waiting to see doctors in 2010. Joey enjoyed their entertainment so much that he asked me to schedule his appointments for when they would be in the waiting room. They taught him to balance a feather on his hand, spin plates and a little bit of juggling. The next year was quite a battle for Joey. He was in a wheelchair, doing therapy, dealing with nerve pain, in and out of the hospital as an inpatient all while trying to go to school. He was a fighter though.

joy wheelchair

joey walker

joey hospital

The next summer, 2011, I won a week of camp to Circus Mojo from a local blogger. Joey was ready to go learn more tricks but was using a wheelchair and crutches again due to pain. Paul said they would work around it and to send him to camp anyway. Joey was so determined to be able to do the silks, German wheel, cable wheel and everything else the circus had to offer that by the end of the week, Paul was balancing the wheelchair on his chin and Joey balanced the crutches in his hand.

joey balance

Joey fell in love with circus that summer and has been working with Mojo ever since. He trains every Saturday, performs for the public every chance he gets, attends summer camps and practices constantly at home.  His hard work has paid off. Circus Mojo is taking Joey to Germany this summer to train with Circus Pimparello for a few weeks. His trip is estimated to cost approximately $2000. Joey is for hire to perform at parties, teach kids circus tricks, babysit, take care of pets and do other odd jobs. All money earned will go toward his trip.

joey flyer

You can also help give Joey a chance of a life time by sponsoring a portion of his trip with a tax deductible donation. Donations can be made to Circus Mojo’s Foundation, The Social Circus Fund, at https://socialcircus.wordpress.com. Just click on Donate Here. Donations can also be mailed to the Social Circus Foundation, 326 Elm Street, Ludlow, Ky., 41016. PLEASE write in the memo or comments that the donation is for JOEY HOLT’S Germany Trip.  Please contact Gina (gina5620@gmail.com) or Nick Stegner (nstegner68@gmail.com) with questions or to hire Joey.

Note: Learn more about Joey at http://local12.com/news/local/circus-helps-teen-recover-from-rare-disease

Prepare for the Big Bumps in Life

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be thankful

I was walking out of select soccer registration on September 27 when I noticed my 16-year-old daughter Andi sent me a text to call her immediately. I was trying to dial as another text came through from my husband Nick telling me the same thing. I immediately felt sick to my stomach. I knew something had to be seriously wrong. In the five seconds it took me to dial, I wondered if something had happened to my pregnant stepdaughter, if a family member had passed or something had happened to one of my stepsons. Both of my bio children were safe at home. Nick answered the phone with a shaky voice. “Joel has been in a car accident in Elizabeth Town and has been air cared to a Louisville Hospital. I’m not sure if he’s okay, I’m not even sure where he is.”

My heart sunk. Joel was 19 at the time and just started his first year at Eastern Kentucky University. I thought he was spending the weekend resting in his dorm so my first thought was they were wrong. They had the wrong kid. But then it sunk in. He was on his way back from visiting his girlfriend at Murray – a five hour drive. I don’t even really remember driving home from soccer registration. I just had to get to my husband.

I quickly packed a few basics and we jumped in the truck with his brother Chris, picked up my step-daughter and started the two hour drive to Louisville. It was a long drive. I remember thinking “don’t throw up, just don’t throw up.”

That night was the beginning of a three month stay in hospitals. I watched my step-son fight for his life and win. Doctors were baffled on how he survived but he did. He is still in recovery but is going to be as good as new. Family support, prayer, friends, amazing health care providers and his determination made him survive.

This wasn’t my first experience with hospitals and praying that a child can overcome the odds. My now 14-year-old son Joey was diagnosed with Langerhans Cell Histiocytosis almost four years ago. He had to undergo a bone graft of the hip, spend months in a wheelchair, years in physical therapy and lots of a counseling for PTSD. He is doing amazing now (I have to give partial credit to Circus Mojo in Ludlow, Ky, for that. They have kept Joey physically fit and give him something to look forward to).

joey german

Joey’s diagnose changed me for the better. I became much less of a worrier and my anxiety reduced tremendously. Although this is the opposite of what most people expect, it really was a natural reaction. It took that diagnosis for me to realize that there is no reason to worry over every little thing and life and really the only thing that matters is our health.  That didn’t mean that I didn’t lock myself in the bathroom and cry about Joey’s condition sometimes. Of course I did. This is my son and I wanted him to be okay.

I shed many tears over the last 3-1/2 months worried about my step-son because that is normal. But I have also regained perspective. Life is valuable and it can be taken from you at any moment. It’s important to surround yourself by positive people who build you up and don’t focus on petty bumps in life because the positive people in your life are the ones who will help you get through the big bumps.

 

optimistic

 

We’re Not Famous

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I’m not famous. My children aren’t famous. Neither is my husband. In fact, there isn’t a single famous person in my family or circle of friends. But I still see all of my family members and friends as super stars. Especially my almost 13-year-old son Joey, AKA Super Joey. Joey is known for his strength and knocking Langerhans out.

Super Joey

Super Joey

Joey isn’t muscular or a big guy. In fact, he’s only 5’1 and under 75 pounds. Yet he still knocked out Langerhans, which was pretty amazing since Langerhans is vicious. I’ve gotten to know him over the last few years and he devours people, mostly kids. Nothing is off limits – he’ll go for the bones, organs and even skin, whatever he can do to take to out his victim. Sometimes even death. It takes a lot to be able to stand up to Langerhans and fight back and even more to beat him down. No, Langerhans isn’t some new trendy boys name or a nickname for a terrible bully.

Langerhans – Langerhans Cell Histiocytois – is a horrible rare cancer that my son beat. This disease, often argued by doctors is to whether it is cancer or an autoimmune disease, is ferocious. It ate Joey’s hip bone causing him to need a bone graft, spend months in a wheelchair, go through lots of physical therapy and much more. Two years later, he still deals with chronic bone pain that puts him on crutches or in a wheelchair for weeks at a time. But the good news is, the LCH is gone. The doctors told him he’s whooped it’s butt and they can’t imagine it will ever attack again. Woohoo!

Super Joey

Super Joey

You’d think we’d be celebrating everyday! And we have celebrated. We are truly ecstatic for Joey but not all of our friends have been so lucky. Our 19-year-old friend Ian Anderson, who also isn’t famous, has LCH in his pituitary gland. He’s been through chemo, surgeries and so much more. He’s probably looking at some sort of life-long treatment and/or follow up.

Princess Sophia

Princess Sophia

Our sweet 5-year-old friend Sophia Lopez, who is not famous either, has another form of Histio – Hemophagocytic Lymphohistiocytosis. This beautiful 5-year-old has spent most of her life in hospitals. She and her mom have traveled to Cincinnati Children’s Hospital from New York City to get the best care possible. They have been living at the Ronald McDonald House for a year while Sophia’s dad and brothers are back in New York. The men her life travel to Cincinnati as often as they can to see their Princess Warrior who has been through chemo, a bone marrow transplant, multiple surgeries and much much more. But that gets expensive and vacation time runs out.

We also think of our friends the Culley/Marshall family. They aren’t famous either. But their daughter Ellisyn is a hero in my eyes. Langerhans didn’t hold back at all when it attacked Ellisyn. By the time she was diagnosed with LCH, it was too late. Ellisyn lost her battle at 15 months old.

So although we are thrilled for Joey, there isn’t a day that goes by that we don’t think about this horrible disease – Histio, Langerhans Cell Histiocytosis, Hemophagocytic Lymphohistiocytosis – that has attacked Super Joey as well as some of our friends (we all met as a result of diagnosis – Histio attacks five in a million).

Most people have never heard of Histio. It doesn’t receive government funding for research, there is no sure cure and there is no known cause. We just know it sucks and can kill. I know some people might think I’m horrible for what I’m about to say but… there are MANY days I wish that a famous person or a famous person’s child would get Histio. Yes, I feel horrible for even saying it but hear me out.

Bengal Player Devon Still’s beautiful daughter Leah was diagnosed with Nueroblastoma and over $1 million was raised in an extremely short period of time. This is awesome! The money went to Cincinnati Children’s Hospital cancer research, which is fantastic. I hate that Leah has this horrible disease but it has brought tons of awareness to Nueroblastoma and childhood cancer.

Lauren Hill, the Mount Saint Joseph Basketball player with an inoperable brain turmor, became famous with the help of the media and has now raised more than $324,000 for the Cure Starts Now. It is horrible that Lauren has been stricken with this disease and she has deserved every bit of media attention she has gotten. She is truly an inspiration to all and I believe her strength and courage will help find a cure for this some day. I have followed her story from day one, cried through the ENTIRE basketball game and will be devastated when she passes. I will always remember that brave angel.

joey rareBut again, I often find myself wishing someone famous or their child would get Histio. I don’t want them to go through all the pain and anguish my friends and family have gone through. I just want that famous person to have a voice for all of us. Believe me, the Anderson, Lopez, Culley/Marshall and Holt/Stegner families have a loud voice. We have been on local media, held fundraisers and educated people but none of us our famous. We don’t have the outlet or the reach that someone famous has. We need a famous person to raise awareness for Histio, to raise funds for research, to help the families fighting this horrible disease and to encourage others to remember the angels we have lost.

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Note: Please contact me at gina5620@gmail.com to learn more about Histio or find out how you can help… You don’t have to be famous. 🙂

Team Super Joey Gears Up for Histio Hike Ohio 2014

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This post is written by Joey Holt.

My mom tells me that I am five in a million. That’s because I have a rare, cancer-like disease called Langerhans Cell

2012 - spent months in a wheelchair

2012 – spent months in a wheelchair

Histiocytosis (www.histio.org) that impacts five in one million. I’m 12-1/2 now but was diagnosed with LCH at age 10 after my white blood cells attacked my hip bone eating it away. I had to get a bone graft, steroid treatment, spend months in a wheelchair, use a walker and crutches and endure 2-1/2 years of physical therapy.

Due to debilitating pain, I have been in and out of the hospital over the last 2-1/2 years and missed a lot of school. Luckily I have awesome teachers and am determined to not fall too far behind. I am in the 7th grade this year.

There is no known cause or cure for Histio. Just like cancer, it can attack the bones, organs or skin again at any time. Many children need transplants or chemotherapy to treat. If it attacks me again, I will undergo chemotherapy. Since it is a rare disease, it does not receive state or federal funding for research. The majority of the money for research comes from the families of Histio patients, the same people who are usually dealing with excessive medical bills.

In spite of everything I have dealt with, I am determined to participate in the Histio Hike Ohio this September in honor of Histio Awareness Month but I need to raise funds and awareness.

Histio Hike Ohio 2013 - Histio Warriors and their siblings

Histio Hike Ohio 2013 – Histio Warriors and their siblings

I am asking you to help one of two ways.

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  1. Buy a 2014 #TeamSuperJoey T-shirt (pictured below) for $15. You can pay via paypal (gina5620@gmail.com) or by
    cash or check. Payment not due until shirt arrives. Be sure to sport your shirt around to raise awareness.
  1. Sponsor me in the Histio Hike Ohio, which takes place September 26-28. Visit http://ohio.histiohike.org/teamsuperjoey. Whether it’s a $5 donation or a $500 donation, it will help.

Please email questions to my mom Gina (Holt) Stegner at gina5620@gmail.com. Money raised will be donated to Histio research in hopes to find a cure for me and others who have Histio.

Princess Sophia - 4-1/2-years-old, has HLH and lives at the Ronald McDonald House, thousands of miles from home for treatment.

Princess Sophia – 4-1/2-years-old, has HLH and lives at the Ronald McDonald House, thousands of miles from home for treatment.

Super Joey

Super Joey

Sincerely,

Joey Holt    🙂

Please help us find a cure.

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Histio Hike Ohio 2014 – For a Cure

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histio ribbon“Being with people who understand,” is what Joey, age 12, said when asked what his favorite part is of the Histio Hike Ohio. Last year Joey was able to meet dozens of other kids, and even a few adults, who also have a form of Histiocytosis. Joey has Langerhans Cell Histiocytosis. His white blood cells attacked and ate his hip bone. He had to get a bone graft, was in a wheelchair for quite some time, took high doses of steroids and pain meds and two years later still does physical therapy. He has been in and out of the hospital over the last two years, has regular check ups in oncology for his cancer-like disease and still deals with unexplained debilitating pain that can last weeks, even months at a time.

Some of the kids he has met have gone through intensive chemotherapy and steroid treatment, received bone marrow and/or organ transplants, have had to move away from their friends and family to get treatment at an out of state hospital and so much more.

This disease can attack any of these kids, including Joey, again at any time. It can attack their bones, skin or organs. It’s just like cancer (Read: At Least it’s Not Cancer). There is no known cause and no known cure. The one comfort these kids get is when they can come together and feel normal, even if it’s just a weekend in Shawnee State Park for Histio Hike Ohio Sept 26-28.

We are in the process of forming Team Super Joey for this year’s hike. We have set a goal to raise $1000. There are two ways you can help us raise the money and find a cure for Joey and his friends.TeamSuperJoey_Mockup_Final (3)

1.  Buy a 2014 Team Super Joey Tshirt. Cost is $15 or four for $50. They come in youth and adult sizes. You can buy via paypal (gina5620@gmail.com), be sure to put your size, quantity and address. You can also email gina5620@gmail.com with your order.

2. Make an online donation to sponsor Joey in the Histio Hike Ohio by clicking here (this is a tax write off).

Please help us find a cure and buy a T-shirt and/or make a donation today.

#TeamSuperJoey

Joey Histio flyer 2014 final

 

Circus Mojo Helped Heal My Son

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Joey, 12, was suffering from unexplained pain again for the last month… Joey was diagnosed with Langerhans Cell Histiocytosis when he was 10-years-old. The cancer-like disease ate his hip bone away causing him to need a bone graft. Although no one was sure if he’d walk normally again, he can run, play and ride a bike like any other kid… most of the time. But then there are times that he is in such severe pain that he can only get around on crutches or in a wheelchair for weeks or even months at a time. Unfortunately it’s just a horrible side effect of this horrible disease.

joy wheelchair

So in early May the unexplained pain started again in his left leg. It eventually got so bad that he was on crutches again, missing school and using the wheelchair quite a bit. Joey became frustrated and borderline depressed. He was missing out on end of the school year fun, couldn’t ride his bike with his buddies or go do anything fun. His oncologist at Cincinnati Children’s Hospital Medical Center ordered test after test to make sure the Histio was not attacking again. Once that was ruled out Joey was able to start physical therapy again. He couldn’t even put pressure on his left foot at the evaluation that Friday. The therapist gave him a few exercises he did over the weekend.

The following Monday he headed to day camp at Circus Mojo in Ludlow, Ky. We knew about Circus Mojo because Paul, the owner, and Sharon, an employee, would often perform in the waiting room of orthopedics at Children’s Hospital when we were there. Joey enjoyed them so much that he had me schedule his appointments around their performance times. Joey and his buddy August headed to camp with Joey’s crutches and wheelchair in tow.

The Circus Mojo staff was awesome about accommodating our special situation. I spoke to Ginny in advance to make sure all would be okay. Paul and his crew made Joey take things slow and didn’t push him to do things that might be hard on his leg. He had physical therapy immediately after camp that day. He couldn’t stop talking about how fun camp was and he was able to get around a little better. The second day of camp came and he was able to do a little more. On the third day he could do even more but there was still one act he wanted to do but Paul told him was too dangerous if he still needed to use crutches. He had PT that afternoon and told his therapist he had to get stronger so he could do everything at camp. On Thursday he arrived at camp with one crutch and barely used it. He was able to do the act.

joey wheel

I drove the boys to camp on Friday. They were both so excited because they were going to learn even more that day and then perform for the families in the afternoon. I showed up for the afternoon performance and could see how excited all the kids were.

joey w circus friends

Joey actually climbed the silks and did what’s called the reverse diaper drop. He was able to walk on a wheel, balance all kinds of things, juggle scarves and so much more. It was awesome! I couldn’t believe this was the same kid who could barely walk at all a week ago. He couldn’t stop smiling.

joey whip pie

I truly believe that camp at Circus Mojo camp played part in Joey’s physical therapy. It gave him a challenge and a goal. He wanted to be able to participate everything. In order to do that he had to do his PT exercises and push himself. It also helped him emotionally and mentally. It gave him something to look forward to everyday. He was excited about learning new acts and seeing his new friends. Camp provided an incentive for him to push himself and get better.

The really awesome part was by Friday… he didn’t need the crutches or wheelchair at all anymore so Joey and Paul found another use for them.

joey balance

My Histio Warrior Celebrates 2 Years

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Joey had a hip bone graft and biopsy two years ago today followed by months of being in a wheelchair, using a walker, using crutches and more than a year of physical therapy. Today, he rode his bike a mile to school. My 12-year-old son Joey is a Histio warrior. On April, 23, 2012, he was diagnosed with Langerhans Cell Histiocytosis. On April 25, 2012, he had major surgery.

joey bike

Although Joey deals with unexplained chronic pain at times, he has not relapsed. Histio is similar to cancer and if it attacks again, he will need chemotherapy. We pray everyday that he will continue to be in remission. At this point, other than checking in with the doctors at Cincinnati Children’s Hospital every few months, Joey could put this disease behind him unless it flares again. But he won’t do that. He is a true warrior. He is fighting for his friends, some he has met and others who he just knows of, who have Histio.

histio image

This picture was borrowed from another Histio warrior.

As I have said before, there is no known cause or cure for this disease. And since it’s considered rare, there is very little funding for research. Histio experts can be found at Cincinnati Children’s Hospital and a Children’s Hospital in Texas. Dr. McClain from Texas came out with a new finding recently that does give Histio families a little more hope because the doctors are starting to understand the disease a little more. You can read that here.

Joey wants to find a cure for himself and his friends. He educates people about his disease whenever he can, he talks to the media, does things for the Histio Association and participates in fundraisers. You can celebrate Joey’s two year anniversary by donating to the Histio Association in his name – Joey Holt – or by donating to Cincinnati Children’s Hospital Medical Center for Histio research in honor of Joey Holt (be sure to write that in the comments).

Our lives changed forever the day Joey was diagnosed and even more so on April 25, 2012 after surgery. But this challenged that was thrown at us has made us appreciate life much more over the last two years. We will find a cure for our friends.

be thankful

Team Super Joey in the Media

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cyclones3My amazing son Joey has been in the media a lot lately so I want to have one spot where you can find links to his stories. This will be the spot. I will update this post as needed.

Joey’s goal is to raise awareness for Histio, and hopefully someday find a cure for his disease.

Histio Survivor Prepares for Fundraising Event, Community Press, July 12, 2013
Enjoying the Little Things and Making Memories, Looking4ward2tomorrow, Nov. 15, 2013

Fort Thomas Boy Fights Rare Disease With a Strong Voice – WCPO Digital, Feb., 2014

Teen is Survivor of Bone-Destroying Disease – Community Press, Feb. 25, 2014
Histio Awareness Video – Produced by Cathy Ross, Starring Joey Holt, Requested by Histio Association, 2014
Rare Disease Day Proclamation, Fort Thomas Matters, Feb., 18 2014
Team Super Joey Fights Histio, Rare Disease Day, Feb., 2014
Joey Advocates for Histio & Rare Disease Day, Fox 19 Morning News, Feb. 28, 2014
Joey is Five in a Million, Cincinnati Childrens Hospital Blog, Feb. 28, 2014
Follow Team Super Joey on Twitter @gina5620 #teamsuperjoey
Follow Team Super Joey on Facebook at Raising2tweens
Thanks to everyone who has shown their support!
cyclones2 cayton family cyclones rare disease hope waiting for trainTeam Super Joey
My Histio Family

joey super herosuper joeyHistio Warriors and siblingsmy histio hike 2

 

Speaking Out for International Rare Disease Day

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cyclones3As my regular readers know, my son has a rare disease called Langerhans Cell Histiocytosis. His white blood cells attacked  hip bone eating it away causing him to need a bone graft and spend four months in a wheel chair. I have told Joey’s story for him hundreds of times through the blog, newspapers, doctors, etc… But Joey is ready to tell his own story.

In honor of International Rare Disease Day, Feb. 28, Joey has planned three ways to spread awareness for his disease. And he wanted to be the one to do it.

1. In November, I wrote a post based on a conversation my son and I had called “I just don’t understand why my disease isn’t important.” This post got a lot of attention in the online world. The Histiocytosis Association read it and asked if Joey would be willing to tell his story on camera. He has been wanting to be an advocate for his disease so he was excited. So with the help of a dear friend, he created this video: http://youtu.be/Vpq3BIYlGQ0. Please take two minutes to watch 12-year-old Joey Holt tell his own story.

rare disease fact

2. In early January Joey decided to write a letter to the mayor of Fort Thomas, the city we live in. He asked her to make a proclamation making Feb. 28, International Rare Disease Day, Histiocytosis Day in honor of Joseph Holt in the City of Fort Thomas. The mayor agreed and the proclamation will made at the Feb. 18 council meeting. He plans to be there to answer any questions anyone might have.

3.  Joey asked me to send a news release about International Rare Disease Day and his disease to the local media. He hopes to get interviews with print and online media and on TV. He wants to teach as many people as possible about rare diseases and Histio. At his young age he realizes that people will respond more to hearing the story straight from the child who has been impacted by this cancer-like disease than from his mother, doctors and other experts. He already has an interview setup with an online publication and he is hoping more will be arranged.

rare diseaserare disease 2These are three fairly simple ways anyone can make a difference and advocate for International Rare Disease Day. So consider doing something like this where you live. You can also help spread awareness by sharing this post and showing the video Joey made. Awareness is the key to a cure. Please be part of the cure.

P.S. Be sure to like us on Facebook! And if you Tweet about us, use #teamsuperjoey and @gina5620.