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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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.
July 22, 2008
A little over a week ago, Riley started having pain in his hip/groin area on his left side. He had not hurt
himself that we knew of, so when the pain didn't go away in a few days, we went to see the pediatrician.
In doing some standard tests, he noticed that Riley was weaker on his left side and ordered some
x-rays. He was looking for something called Legg-Calve Perthes Syndrome. I waited a few more days
to see if Riley would feel better..... I didn't want to get "more" x-rays on this poor kid. The pain continued
and was getting worse so we went for the x-rays on Friday afternoon.
The doctor called first thing Monday morning stating that there is an abnormality in Riley's left hip. We
are scheduled to see the Pediatric Orthopedic specialist on July 28 at noon. I called the Oncologist to
see if this syndrome could be a result of the chemo/steroid treatment and they confirmed our suspicion
that this disease is directly related to Riley's treatments.
Legg-Calve Perthes Syndrome is a degenerative disease of the hip joint, where a loss of bone mass
leads to some degree of collapse of the hip joint, that is, to deformity of the ball of the femur and the
surface of the hip socket. It is also referred to as Osteonecrosis in adults. Basically, the bone is lacking
proper blood supply from the artery and the bone begins to die.
We are not sure to what extent Riley has this or what his treatment will be - it could be as simple as
medication (more medication- what are the side effects from that stuff?) and physical therapy or as bad
as some sort of fixture to alleviate the pressure on the hip joint or surgery. Once we know exactly what
we are dealing with, I will update the website again.
We are hoping that this will be the only residual symptom Riley will experience.
A little over a week ago, Riley started having pain in his hip/groin area on his left side. He had not hurt
himself that we knew of, so when the pain didn't go away in a few days, we went to see the pediatrician.
In doing some standard tests, he noticed that Riley was weaker on his left side and ordered some
x-rays. He was looking for something called Legg-Calve Perthes Syndrome. I waited a few more days
to see if Riley would feel better..... I didn't want to get "more" x-rays on this poor kid. The pain continued
and was getting worse so we went for the x-rays on Friday afternoon.
The doctor called first thing Monday morning stating that there is an abnormality in Riley's left hip. We
are scheduled to see the Pediatric Orthopedic specialist on July 28 at noon. I called the Oncologist to
see if this syndrome could be a result of the chemo/steroid treatment and they confirmed our suspicion
that this disease is directly related to Riley's treatments.
Legg-Calve Perthes Syndrome is a degenerative disease of the hip joint, where a loss of bone mass
leads to some degree of collapse of the hip joint, that is, to deformity of the ball of the femur and the
surface of the hip socket. It is also referred to as Osteonecrosis in adults. Basically, the bone is lacking
proper blood supply from the artery and the bone begins to die.
We are not sure to what extent Riley has this or what his treatment will be - it could be as simple as
medication (more medication- what are the side effects from that stuff?) and physical therapy or as bad
as some sort of fixture to alleviate the pressure on the hip joint or surgery. Once we know exactly what
we are dealing with, I will update the website again.
We are hoping that this will be the only residual symptom Riley will experience.
August 5, 2008.
Riley had his MRI this morning and the doctor already called to say they don't see any abnormalities in the
bones, tissue or lymph nodes. So he could have had some inflammation or a virus that caused the pain.
He has been on Motrin twice a day for the past week, so he hasn't complained of pain. We will take him off
the motrin and see how he feels. School starts tomorrow so if he is still in pain, we will know after he
spends a few days at school. Thank you for all your caring messages and emails.
Riley had his MRI this morning and the doctor already called to say they don't see any abnormalities in the
bones, tissue or lymph nodes. So he could have had some inflammation or a virus that caused the pain.
He has been on Motrin twice a day for the past week, so he hasn't complained of pain. We will take him off
the motrin and see how he feels. School starts tomorrow so if he is still in pain, we will know after he
spends a few days at school. Thank you for all your caring messages and emails.