Team Super Joey Gears Up for Histio Hike Ohio 2014

August 26, 2014 by WriteAcrossTheRiver

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

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

I am asking you to help one of two ways.

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.

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.

Super Joey

Sincerely,

Joey Holt 🙂

Please help us find a cure.

Histio Hike Ohio 2014 – For a Cure

July 21, 2014 by WriteAcrossTheRiver

“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.

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

Why We Hike – Histiocytosis

October 3, 2013 by WriteAcrossTheRiver

At Least It’s Not Cancer…

September 11, 2013 by WriteAcrossTheRiver

Histio Awareness Month; Find a Cure for Super Joey

September 2, 2013 by WriteAcrossTheRiver

Most people never get to meet their hero. I was lucky enough to give birth to mine. My 11-year-old son Joey is an amazing young man. His white blood cells attacked and ate his hip bone away causing him to need a bone graft when he was only 10-years-old. He spent months in a wheel chair, then a year of physical therapy and in and out of Children’s Medical Center for a year. Eighteen months after diagnosis, he is training for a 6 mile hike to raise awareness and money for research for Langerhans Cell Histiocytosis.

Histio Hike Ohio takes place Sept. 27-29 at Shawnee Park in Ohio. Team Super Joey is made up of nine friends and family members. We are all looking forward to meeting other families who deal with LCH. It is only diagnosed in about five in a million so we don’t get to meet many other families who are dealing with Histio.

The other night I was tucking Joey in. He was wearing his Team Super Joey T-shirt. I’m not sure how we got on this topic but he said to me “mom, I’m not normal. I’m wearing this shirt because I’m not normal.” It broke my heart to hear that. I told him that no one is really “normal.” Everyone has something unique about him. I reminded him that he has beat this disease so far (it can strike again at any time) and that his courage can help other kids. He decided to do this hike to help other children. To make them realize that they can fight Histio with the right doctors, determination, and courage. I reminded him how he will be meeting others with his disease later this month. He smiled. He remembered that so far he has been one of the lucky ones. Others have lost their lives to this disease but Joey has been lucky enough to only lose a hip bone.

He then told me how he couldn’t wait to go to the hike and meet other kids, and adults, who understand what he has been through. He wants to tell other children they can get through this too. Joey wants to reach out to children at Children’s Hospital who have been diagnosed with Histio. He knows he was lucky enough to live near Cincinnati Children’s (one of the few hospitals that specializes in Histio) and to have his support system so close so he wants to give support to others who aren’t as lucky as him. He truly is an amazing kid.

I’ve had other heroes in my life… There have been historical figures, athletes, actors, activists and others who I never met. Honestly, I never thought I’d meet any of my heroes. But now, I’ve been lucky enough to give birth to my hero. My son’s courage is amazing. He builds me up and gives me strength everyday.

I am asking you to show my hero your support by donating any amount in Joey’s name to the hike and help us find a cure for this cancer-like disease. You can also help spread the word about Histio by sharing the picture below and this post via email and Facebook since September is Histio Awareness Month.

P.S. Follow us on Facebook!

Find a Cure for Joey

August 2, 2013 by WriteAcrossTheRiver

My 11-year-old son Joey suffers from Langerhans Cell Histiocytosis. His white blood cells attacked his hip bone and ate it away causing him to need a hip bone graft and spend several months in a wheel chair. He’s been in and out of the hospital for the last 16 months. This disease could attack again at any time. There is no cure. There is very little funding for researching. You can help us find a cure for Joey and the thousands of other kids this disease affects.

My son is training for Histio Hike Ohio that takes place at the end of September. He plans to do the six mile hike. He must get his leg and hip stronger to be able to participate without pain. He walks, rides his bike and does his physical therapy exercises everyday. He is looking forward to meeting other kids with Histio and being able to talk to them about what he is living with and what he’s been through. This hike has given him something to look forward to and an incentive to work hard and get stronger.

There are two ways you can show Joey your support and help find a cure for his disease.

1. You can sponsor him in the hike by going to this site. We truly appreciate your donation whether it’s $5 or $500.

2. You can buy a Team Super Joey T-shirt (art below). Shirts cost $15. They come in men’s and youth sizes and should not shrink. They are super soft light-weight Ts. Joey’s 14-year-old sister designed the shirts. You can email me your T-shirt order (gina5620@gmail.com) or put it in a comment on this post. If you know me personally, you can give me the money or anyone can pay via paypal by entering my email address. We will ship T-shirts to those out of the Greater Cincinnati area at no extra charge. Proceeds will be given to Histio research.

T-shirt art – the word “Team” will be above Super on the T-shirts

It would be amazing for Joey to see people in the community, family and friends sporting these T-shirts in support of him.

Please help us find a cure for Joey and all the other kids who suffer from this rare disease (or rarely detected) by making a donation and/or buying a T-shirt. We truly appreciate your support!

Please leave a note here in encouraging Joey in his training for the hike. He loves reading your words of encouragement.

Please follow Raising2tweens on Facebook.

Write across the river

Tag Archives: histio hike ohio