Riley Connolly's Website >
What does Riley have?
Where can you find more information about this disease?
How can you help Riley or other children with LCH?
Riley has Langerhans Cell Histiocytosis or LCH. LCH is a rare blood disease that is caused by an excess
of white blood cells called histiocytes. The histiocytes cluster together and can attack the skin, bones, lung,
liver, spleen, gums, ears, eyes and/or the central nervous system. The disease can range from limited
involvement that spontaneously regresses to progressive multi-organ involvement that can be chronic and
debilitating. In some cases, the disease can be life-threatening.
of white blood cells called histiocytes. The histiocytes cluster together and can attack the skin, bones, lung,
liver, spleen, gums, ears, eyes and/or the central nervous system. The disease can range from limited
involvement that spontaneously regresses to progressive multi-organ involvement that can be chronic and
debilitating. In some cases, the disease can be life-threatening.
This disease afflicts only 1 in 200,000 people each year and the good news is there is an 85% survival rate.
But because the disease is so rare, the Histiocytosis Association has to rely on private funding for research.
You can make a donation at the histio.org website. To help Riley, an account has been set up to help with
medical bills that may not be covered by insurance and other treatments that Riley will have to keep him
healthy. You can send your contributions to: Bank of Arizona, 5050 N. 44th Street, Phoenix, AZ 85018.
Please make checks payable to The Riley Connolly Contribution Fund. The account number is 8091021119.
But because the disease is so rare, the Histiocytosis Association has to rely on private funding for research.
You can make a donation at the histio.org website. To help Riley, an account has been set up to help with
medical bills that may not be covered by insurance and other treatments that Riley will have to keep him
healthy. You can send your contributions to: Bank of Arizona, 5050 N. 44th Street, Phoenix, AZ 85018.
Please make checks payable to The Riley Connolly Contribution Fund. The account number is 8091021119.
Riley Connolly's fight
to beat LCH
to beat LCH
The best place to go to find out more about LCH is www.histio.org, then look at LCH in children. Riley has
single system LCH that has effected his lymphnodes.
single system LCH that has effected his lymphnodes.
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WOW, I can't believe it's April already, the year is flying. Lots of good things happening here. Riley's
school is doing a spare change drive to help Riley raise additional funds for the HAA. We are still just
about $2,500 short. A HUGE thank you to everyone who has already donated, we love all of you!! Then
on Thursday, April 10, we are having a fund raising night at Rubios Baja Restaurant on Warner/Cooper
from 3 - 9pm. 20% of the proceeds will be donated to the HAA but if you're going, you need a flyer. If
you would like a flyer, please let me know, I will deliver one to you or can mail one.
The shirts on ebay are doing well, we have sold about 25 so far, please continue to help us spread the
word.
Ironman is next Sunday, the 13th, I am as ready as I can be. Every stroke, pedal and step I take that
day is in honor of Riley and all other children afflicted with Histio, that is the strength that will keep me
going. If you would like to follow my progress without having to be in Tempe for the event, you can
track me online. Go to www.ironman.com, along the top of the page, there are tabs, click on Ironman
Live. You can track me by bib number, 2163 or you can track me by last name, CONNOLLY, you have to
make sure the spelling is correct to find me.
The Tuesday after Ironman, I take my bike to the shop and have it packed to be shipped to Florida, and
on the 27, we do St. Anthony's in St. Petersburg with Team-Histio. I am so excited, we have our new
Team-HIstio tri gear and I can't wait to wear it for both events.
May 22 - 28, we will be in Maui for Riley's Make-A-Wish trip, we can't wait. Riley deserves this trip after
everything he has been thru and continues to endure. I wish there was a day that we could just forget
about Histio and never have to worry about it again, but that day will never come...but everyday that
Riley is in remission is the greatest day of our lives.
I will write again after Ironman. In the meantime, stay healthy and positive, a good attitude and enjoying
life means more to your health than anything!
school is doing a spare change drive to help Riley raise additional funds for the HAA. We are still just
about $2,500 short. A HUGE thank you to everyone who has already donated, we love all of you!! Then
on Thursday, April 10, we are having a fund raising night at Rubios Baja Restaurant on Warner/Cooper
from 3 - 9pm. 20% of the proceeds will be donated to the HAA but if you're going, you need a flyer. If
you would like a flyer, please let me know, I will deliver one to you or can mail one.
The shirts on ebay are doing well, we have sold about 25 so far, please continue to help us spread the
word.
Ironman is next Sunday, the 13th, I am as ready as I can be. Every stroke, pedal and step I take that
day is in honor of Riley and all other children afflicted with Histio, that is the strength that will keep me
going. If you would like to follow my progress without having to be in Tempe for the event, you can
track me online. Go to www.ironman.com, along the top of the page, there are tabs, click on Ironman
Live. You can track me by bib number, 2163 or you can track me by last name, CONNOLLY, you have to
make sure the spelling is correct to find me.
The Tuesday after Ironman, I take my bike to the shop and have it packed to be shipped to Florida, and
on the 27, we do St. Anthony's in St. Petersburg with Team-Histio. I am so excited, we have our new
Team-HIstio tri gear and I can't wait to wear it for both events.
May 22 - 28, we will be in Maui for Riley's Make-A-Wish trip, we can't wait. Riley deserves this trip after
everything he has been thru and continues to endure. I wish there was a day that we could just forget
about Histio and never have to worry about it again, but that day will never come...but everyday that
Riley is in remission is the greatest day of our lives.
I will write again after Ironman. In the meantime, stay healthy and positive, a good attitude and enjoying
life means more to your health than anything!
April 5, 2008
April 14, 2008 - Ironman Photos in the Photo Album
May 11, 2008 - Happy Mother's Day!
Florida and the St. A's tri was awesome. Go to the following link to view photos and a movie of our
journey. St. Anthony's Triathlon photos/movie - April 27, 2008
As far as fundraising, we were able to present Gary Glenn, the founder of Team-Histio, with $1313 in
donations. Our Rubio's fundraiser raised $213, the school spare change drive raised $500, Sean and I
matched the $500 donation and my training partner Cindy donated $100. Yeah!!!!!!
We are getting ready for our trip to Hawaii in less than 2 weeks, we are so excited. Riley has been
practicing snorkeling in the tub, he's just a little excited. Yeah right, he is counting down the days!
I was recently approached by an amazing 10 year old girl named Mallorie, who has the will, desire and
drive to compete in triathlons. I, of course, was willing to help her and share my passion for this sport.
She has inspired me to hold a kids tri clinic this summer for kids ages 7-12. For more information
contact me at skfr@rileyconnolly.com
We will practice at my house on Saturday's and get the kids ready for the Chances for Children Youth
Triathlon on July 27, 2008. The clinic is completely free, but limited to 8 kids due to the size of my pool.
Here is the link to the triathon info and sign up: Chances for Children Triathlon
About a week ago, my very good friend's newborn son was diagnosed with UCD, Urea Cycle Disorder.
His body does not make the enzyme needed to break down protein. This is a very serious disorder, there
is no cure, only management of his diet, everyday for the rest of his life. If he gets too much protein, it
turns into ammonia and can cause brain damage and/or death. If he doesn't get enough protein, his body
will break down the protein in his muscles and other areas of the body, which can also be deadly. If
anyone out there knows anyone who has dealt with UCD, please contact me, she could use support from
someone who has knowledge and experience. In the meantime, please say a prayer and send good
vibes out to Amy, Lester, Lilly and Mitchell Magyar, they live in CT.
Florida and the St. A's tri was awesome. Go to the following link to view photos and a movie of our
journey. St. Anthony's Triathlon photos/movie - April 27, 2008
As far as fundraising, we were able to present Gary Glenn, the founder of Team-Histio, with $1313 in
donations. Our Rubio's fundraiser raised $213, the school spare change drive raised $500, Sean and I
matched the $500 donation and my training partner Cindy donated $100. Yeah!!!!!!
We are getting ready for our trip to Hawaii in less than 2 weeks, we are so excited. Riley has been
practicing snorkeling in the tub, he's just a little excited. Yeah right, he is counting down the days!
I was recently approached by an amazing 10 year old girl named Mallorie, who has the will, desire and
drive to compete in triathlons. I, of course, was willing to help her and share my passion for this sport.
She has inspired me to hold a kids tri clinic this summer for kids ages 7-12. For more information
contact me at skfr@rileyconnolly.com
We will practice at my house on Saturday's and get the kids ready for the Chances for Children Youth
Triathlon on July 27, 2008. The clinic is completely free, but limited to 8 kids due to the size of my pool.
Here is the link to the triathon info and sign up: Chances for Children Triathlon
About a week ago, my very good friend's newborn son was diagnosed with UCD, Urea Cycle Disorder.
His body does not make the enzyme needed to break down protein. This is a very serious disorder, there
is no cure, only management of his diet, everyday for the rest of his life. If he gets too much protein, it
turns into ammonia and can cause brain damage and/or death. If he doesn't get enough protein, his body
will break down the protein in his muscles and other areas of the body, which can also be deadly. If
anyone out there knows anyone who has dealt with UCD, please contact me, she could use support from
someone who has knowledge and experience. In the meantime, please say a prayer and send good
vibes out to Amy, Lester, Lilly and Mitchell Magyar, they live in CT.
July 3, 2008.
Well, I have really slacked this time. We got home from Riley's Make-A-Wish Hawaii Trip on May 29 and I
still haven't added pictures to the website. We had an awesome time. We stayed in the 5 star Hyatt on
Ka'anapalli beach in Maui, which was beautiful all by itself. We took a helicopter ride over the volcano
(which is now just a crater), but it was still absolutely beautiful. And we were also taken over the
waterfalls of the rain forest in Hana. We also went snorkeling, took a ride in a submarine, chartered a
deep sea fishing boat for the day - (didn't catch a thing), went parasailing and did a lot of playing in the
beach and pool. Mom and Dad also took a break from our normal workout regime and managed to put
away an awful lot of Mai Tai's and Margarita's!!! The boys drank a lot of virgin Pina Coladas, that's all
Finton wants now. Riley had a really awesome trip and didn't want to come home. I don't know how we
managed to raise these beach boys in AZ, but they absolutely love the ocean. Someday we will have to
move near an Ocean for them.
After Hawaii, I started a kids triathlon clinic for kids ages 5-12. I now have 11 kids, with my new addition
this week and it has been so much fun. I do it for free at my house and in my neighborhood. The kids
have been so amazing and are really into it. We swim laps, ride our bikes around the block and run
around my park in front of the house. These kids are going to be ready come July!! Our triathlon,
Chances for Children, is on July 27 and I plan to take lots of pictures.
I also started a home business selling the most amazing Vitamin/mineral supplement on the market
today. I started using this supplement first and within 2 weeks my elbow pain subsided and within 6
weeks, the pain in my neck and shoulder from breaking my arm 4 years ago, was gone. Not to mention
how great I feel everyday of my life. The website is www.myvemma.com.connolly
If you are interested in trying Vemma, please make sure to sign up on my website as a member to get a
discount and rebates. Or feel free to contact me for more info or free samples. If you like energy drinks,
you have to switch to Verve!. It's the only healthy energy drink out there. It has the Vemma nutrition in it
to make it healthy for you.
So - here are some pictures - you can click on them to make them larger.
Well, I have really slacked this time. We got home from Riley's Make-A-Wish Hawaii Trip on May 29 and I
still haven't added pictures to the website. We had an awesome time. We stayed in the 5 star Hyatt on
Ka'anapalli beach in Maui, which was beautiful all by itself. We took a helicopter ride over the volcano
(which is now just a crater), but it was still absolutely beautiful. And we were also taken over the
waterfalls of the rain forest in Hana. We also went snorkeling, took a ride in a submarine, chartered a
deep sea fishing boat for the day - (didn't catch a thing), went parasailing and did a lot of playing in the
beach and pool. Mom and Dad also took a break from our normal workout regime and managed to put
away an awful lot of Mai Tai's and Margarita's!!! The boys drank a lot of virgin Pina Coladas, that's all
Finton wants now. Riley had a really awesome trip and didn't want to come home. I don't know how we
managed to raise these beach boys in AZ, but they absolutely love the ocean. Someday we will have to
move near an Ocean for them.
After Hawaii, I started a kids triathlon clinic for kids ages 5-12. I now have 11 kids, with my new addition
this week and it has been so much fun. I do it for free at my house and in my neighborhood. The kids
have been so amazing and are really into it. We swim laps, ride our bikes around the block and run
around my park in front of the house. These kids are going to be ready come July!! Our triathlon,
Chances for Children, is on July 27 and I plan to take lots of pictures.
I also started a home business selling the most amazing Vitamin/mineral supplement on the market
today. I started using this supplement first and within 2 weeks my elbow pain subsided and within 6
weeks, the pain in my neck and shoulder from breaking my arm 4 years ago, was gone. Not to mention
how great I feel everyday of my life. The website is www.myvemma.com.connolly
If you are interested in trying Vemma, please make sure to sign up on my website as a member to get a
discount and rebates. Or feel free to contact me for more info or free samples. If you like energy drinks,
you have to switch to Verve!. It's the only healthy energy drink out there. It has the Vemma nutrition in it
to make it healthy for you.
So - here are some pictures - you can click on them to make them larger.
