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Crohns Colitis - My Son's Battle
Domenic's Infusion for February 2012

Some of you might remember the interview that +Shefali Burns did with me, back in the beginning of January, about Crohns Colitis disease and how my son has been battling it since he was born ( http://youtu.be/wP7cNbsbJHk ). Its a constant struggle for him, and unfortunately, one that he'll have to struggle with for the rest of his life.

One, of the many, things we have to do is a monthly infusion of a medication called Remicade. The entire process is roughly 6 hours long and requires it to be administered in the hospital ( Children's Hospital of Philadelphia ).

Today was our scheduled appointment for the month of February and Domenic got a special surprise thanks to +John Butterill and the sheer power and greatness of +Google+ Hangouts.

Armed with his iPhone, Nikon camera, and probably 10 layers of clothing, +John Butterill took my son on a photo walk around Rosedale, Ontario, Canada while he was getting his infusion done. Domenic loved every minute of it! For the hour that John braved the harsh weather conditions to show my son around Rosedale, my son didn't have to worry about blood pressure cuff's squeezing his arm too tight, the uncomfortableness of having tubes stuck through his arm, the drip rate of the medicine "burning" him ( the meds must be administered at a specific rate per hour ), or having to be stuck in a hospital when he much rather be at school!!!

+John Butterill is nothing less than a saint in my eyes! He brought a TON of joy to my son today, of what otherwise would have been, another excruciating day for him! This isn't the first time John has done it either. He took +C. Corey Fisk on a similar photo walk ( http://goo.gl/6Dh0z ).

From the bottom of my heart... THANK YOU +John Butterill!!!
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161 comments
 
My heart goes out to your sons bravery and the love he receives from the people around him. I am a flash developer. Contact me if I can help too.
 
Thanks for sharing the pics +Frank Garufi Jr. and thanks +John Butterill for doing this for Domenic, I have tears streaming down my face at the moment as I read the post and see the pics (((hugs)))
 
+M Monica - My thoughts, prayers, and support are always with you too! I appreciate the support you have given us and know that we are here for you as well :)

We've been given something by +Google that is MUCH more than just 'social'!! We've been given a tool that can touch people's lives in a very positive and powerful way. The amount of good that can come from this is endless. And I plan on using it to bring as much happiness and help to as many people as I can :)
 
+Ndella Tall - Please dont feel bad... Instead, find a small act that you can do that would touch someone's life, the way +John Butterill did for my son! John's act was by no means small... But I think you understand what I'm trying to say! We dont need to feel bad.. We just need to give a little something of ourselves to bring happiness and joy to those who could use it the most! :)

+Robert Blackwood - Through all his problems, my son's bravery and courage is greater than some that are 10x his age and ability. He is truly blessed despite all the problems he's been given.
 
Your son has strength most of us cannot imagine. He is as brave as our most admired military team he may understand: Navy Seals. Tell him he has what it takes to be on that team.
 
+Rob B. - We NEVER give up hope and we ALWAYS find the good, even in the hardest moments :) Unfortunately, he didn't respond at all to the Humeria. He's only 7 and roughly 38lbs. Due to his age and weight, our options are limited.
 
Major prayers, lots of love and hope and if I could .. I would send him a snowman by mail! Hmmm ... wonder if we could figger out a way! HUGS, many many big HUGS! Would he like ANYTHING from Alaska?!
 
So heartbreaking. Thanks for sharing your little guy with us
 
I hope he feels better!
 
i hope he feels better! :P
you did tell us to say it again
 
I truly feel for you guys I've battled with it for 11 years now! Please make sure you have a good Dr. that knows what he is doing! Study and read as much as you can on the medications for the disease sometimes they can be worse than the disease! You all will be in my thoughts!!
 
Thank you +Kimberly Lackey.. I do have to say, that I have my son surrounded by the best of the best doctors! We are very fortunate to have them!!! :) And while they are the best, I still ALWAYS do my homework too :)
 
Peace and blessings upon you and your family, try to smile every day :) and be thankful to God
 
That is great! It makes a big difference in everything!!! I had to find it out the hard way in the beginning. 
 
Oh wow what a great idea! So glad for people like +John Butterill to share his time and talent with your son. I hope his condition improves, who knows there may be people working on the solution for his illness as we speak and he won't have to suffer with it the rest of his life. Miracles of modern medicine, they do happen!
 
This disease sucks. I was diagnosed at an early age and have been through many different treatments to help it. Nothing worked until the infusions started about 6 years ago. The treatments are very effective for me, and I hope they are for this little guy. Take care, and know there is much support for you out there.
 
get better you will have god on your side just beleive you will get the way of you want godbless you and your family.
ps. im 13 and live long
 
A brave young man and dad; in my thoughts and prayers!
 
hope you get better! never lose faith! <3 (:
 
ur son made me realize how luky i am i hav prayed 4 him and i hope he gets betta
 
Let God be with him. I hope he gets well.
 
This is and will be a hard path for your brave Boy and for the family,but never stop believing in God and keep loving that little boy,that is the best medicine LOVE.....
 
Wish your son all the best. I'll be praying for him.
 
I hope your son gets better he is a brave little guy and so are you for dealing with this disease. My son was nine when he was diagnosed with crohns disease I went a year watching my son doubled over on the floor and pains in his stomach and phone calls from the school to come and pick up your son he is sick. They blamed all of this on stress and I had no clue what to do so my sons doctor gave me a name of a pediatric stomach doctor and he did a biopsy and it showed he had crohns disease. He is taking pentasa three a day and he does have some flare ups but not like he has had. I hope your son gets better and you find a medication that will help him they are so helpless when they are in pain,
Kam B
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My Prayers Go Out To Him.....
 
Sending Positive Healing Energy towards Himand your entire Family!
 
I'm terribly sorry to hear about your son. I wish him the best in his journey.. I know quite few with Crohns and my husband, while it is not Crohns, is suffering a lot with chronic stomach issue as well. It's tough! At least technology is there to entertain us, anywhere!
 
+Frank Garufi Jr. - THANK YOU SO MUCH for sharing this beautiful moment! Domenic's strength and bravery mixed with +John Butterill's compassion and generosity remind me just how beautiful and amazing human beings can be. Sending love and healing thoughts to sweet, Domenic... XOXO
 
My heart and prayers go out to you.
 
You should read up about parasitic worms.. It sounds crazy, but the evidence seems to suggest that having a parasitic worm in your gut protects and may even cure you from illnesses like Crohn's
 
My son has a very mild case of indeterminate Colitis. Thank you for sharing and your son is in my thoughts.
 
so the sickness, how is it affecting your son?
 
Wow! i am sad that he has this disease.

p.s.
hope you feel better:)
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I will pray for him tonight. Everyone should too
 
My grandma has breast cancer does one of your family members have something?
 
I'm so sorry to hear that! My best friend has bc and it has been a struggle for her. I've been crocheting pink ribbons and passing them out all over town. How is your gran holding up?
 
idk i cant say nothing
 
miah i know in this age always child used every thing so its stomach is up down ..............and doing loses motion
 
That's a beautiful story. Give your son a squeeze for me. What a trooper!
 
My heart is with you and your brave son .
 
Very painful to deal with... Our best wishes for this sweet young man :)
 
ok thats not my son thats my friend
 
hey miah not my son its ur son
 
That is so amazing, what a wonderful, thoughtful idea! I hope this is one idea that goes viral. Best wishes to your son and family!
 
Remicade is tough drug all around. It's tough to make, tough to get insurance coverage, and tough to deal with the infusion, if you are a patient. Hang in there, I know things will improve.
 
I myself have this disease and get infusions every 8 weeks for about 3-4 hours. I have battled with it, and don't let it or anything else to get in your sons way. I would love to switch places with your son some time and maybe he could show me around a park or on of his favorite places while I receive my treatment? let me know
 
i know he will get betta i jus know it!!! :-)
 
I highly recommend considering slowly transitioning your son to a raw vegan diet. I know a raw food expert who cured himself of colitis. Raw food helped me with arthritis as well!
 
What a brave lad. Booger Bender sends his greetings. :)
 
that is totaly sad i cannt belive this
 
Quite a kid. Give him my best Frank.
 
Dear Frank Jr,

I am sending you as much positive energy as I can!

I would like to propose you to really focus on the moments where you are dreaming or day dreaming that you are fully healthy and that is also valid for the loving and caring people around you.

All of that, because I truly believe that dreams are made to be realized, and I would simply like to encourage you by sharing a true story, one that is happening right now... And it really feels like a dream!

In fact, I am a survivor of a heart deformity at birth, a Leukaemia diagnosed at age 12, and more recently a major car crash on a Highway at high speed. I am 28 years old.

Statistically, I am dead, but in the real world, I am definitely alive. And what is so special about that, is the feeling I truly appreciate the gift of life at every second, and especially the moments I can positively reflect on the pain and distress I went through, and realize that holding on and believing in my dreams has paid off for me and my loved ones.

I am also convinced you can learn to achieve a general feeling of well-being no matter what your reality is, as long as you believe in your dreams.

And you know already that pain and / or distress can be lived at different levels of intensity when you stop yourself for a small moment to conclude that some moments make you feel better than others... And if you were born, you will surely die someday, somehow, not now... And I deeply believe that life changing challenges such as the illness you are diagnosed with will surely have some form of purpose for you and those around you, someday, somehow, if you have dreamed about that moment.

What you still don't know is that I am the owner of a few medically diagnosed illnesses: major depression, generalized anxiety disorder, serious post-traumatic stress syndrome, not to mention the mild to medium back pain since the accident last December 27.

Hey! I am not complaining because I get better and better every day at managing the pain and distress that life has decided to put in my path because I chose to live as positively as I possibly can to create my own wave of invincible happiness. Sure I can surf on it and share it! On a daily basis, I like to set myself goals that are realistically achievable for me, I dream and day dream about them, and when my health allows me to achieve those goals, I stand very happy and proud, or in other words, smiling!

I now even take some time calming down people around me when I feel they are worried about me.

Right now, I have all the help I can get, and I am convinced you are and will be just fine for as long as you and your loved ones can dream!

Make it a great day,

Jonathan David Roy
 
this is the real reason for the Medread project..//
 
Probably the most fantastic magician I have ever seen - and I'm old! - is called Dynamo. He performs amazing stuff, truly amazing. Leaves Blain and Co in the dust. Anyway, he has Chrons.
 
+Frank Garufi Jr. I want to share something here ... maybe it will make a difference, maybe not. I was originally diagnosed with Crohn's when I was in college. in the early 70's. I had two re-sections ... one in the late 70's and one in the mid 80's. it nearly took my life. I took prednisone and other meds most of my adult life. Several years ago, my gastroenterologist suggested I try a probiotic, Align GI. After two months, I switched to Activia yogurt and later to Lifeway Kefir. I am, as far as I can possibly tell, fully in remission. I am more "normal" in my intestinal function than at any time since my early teens. Was it all really about intestinal bacteria? Is this a freak remission? Or is it the "real thing"? ... I don't know. But, there is hope. Sometimes good things happen. Feel free to contact me, Frank ... or anyone else, for that matter.
 
Wife is on Remicade, as well. Given that her dosage has a "market" cost of $7,000/infusion, I'm really glad of having medical insurance. At eight infusions/year, that'd be the best part of $60K/year if I was doing it out of pocket. Even if I was paying just the insurer-negotiated rate as out of pocket, it'd set me back back $20K/yr. Dunno what we're gonna do when it comes time to retire (beyond hope that it's either covered by Medicare or that the price has dropped radically, by then) or what would happen were I to either become unemployable or have to switch to a lesser insurance plan.

Only good part of the whole ordeal is that my wife is currently capable of doing the "fast infusion" therapy option. So, it's only a little over an hour of time in the infusion-chair.
 
My prayers to you and your family. He is a very speical kid! An inspiration, I am sure.
 
As we say in Ireland Go on ya mad bastard. Basically You fucking got this.
 
Finally some inspirational news,there are still some decent people around!!take care Frank Garufi Jr.
 
My husband has Crohn's and also gets infusions. All the best to you and your son.
 
This story gave me goose bumps! What a wonderful way to refocus his mind :)
 
chronic inflammatory diseaseof the gastroinestinal tract that involves the distal portion of the ileum. /ileus lL fr,Gk eileos,fr eilyein to roll/voluble/ ilea /NL,alter. of,l ilia ,pl groin,viscera the last divison of the small intestine extending between the jejumum/large intestine / ileitis- inflammation
 
Dr. Ray Charles in Scottsdale, Arizona assisted my dear 22 year old friend get off prednezone and get in charge of her Crohns disease. I recommend the parents of this young boy give Dr. Charles a call and speak to him regarding this. Dr. Ray Charles is leading edge and has assisted by my husband and I with rare medical issues that no other doctor could assist with.
 
Oh my god. How sad is that I hope we coudl start a fund raiser or somthing to help that poor soul.
 
IHEOYE ,IHS,IHE,IEOUS =JESUS.YOU ARE IN PRAYERS,andwith him,his childern=postive power,just believe within,faith throughout in trust,/with prayer
 
I have been on Remicade, it is a no fun. I can't imagine having to take it is a little guy. I'm lucky I wasn't diagnosed with RA until I was 36. Those of us with RAD, have to be brave and hopeful that there will be a cure.
I'm sure being a computer type guy you have searched everywhere, but I would recommend the RA warrior website. There is usually a good discussion going about docs, meds, and general info our disease. God Bless.
 
GOD BLESS/LOVE keep high chin,UPPPPPPPPPPPPPPP!
 
yes. god bless, and may the believers, family, n friends pray for you
 
i have chrons colitis desease i know how he feels :)
 
Hang in there and good luck. All I can do is pray for you, but prayers are answered. Good luck. Best wishes
 
Poor boy, (I suffer from bouts of colitis & that's bad enough) hope they find a cure 4 him
 
my best friend has Crohns Colitis disease. Remicade didn't help her, she had a surgery to remove 19 inches of her small intestine. After the surgery she hasnt had any crohns symptoms since! I pray your son finds a solution to atleast help ease the pain of crohns.
 
i don't know you but poor little guy get better don't give up
 
What a story! And what +John Butterill did is so touching so beautiful. There are walking angels on this earth everywhere and we need to stop, look around and we find one when we need one. He was just that for your son. This made me watery eyed and it warmed my heart. I will have your son in my prayers. Get well big guy and God is with you!! :)
 
Frank, I am a 38 y/o symptom free Chrone's Survivor and I have to tell you what has made all the difference in my life... My docs a long time ago encouraged me to keep a food journal and document if I had pain recurring after certain foods... I found that meat and cheese itrritated me the most... Though I have never completely cut out dairy, I have cut back and cut out meat intirely... Pain free for over 6 years now!!! It's all about diet guys!
 
Man not a fun thing for a kid so young especially. I'm 23 and it kills me. High five to the brave one there!
 
Positive vibes your sons way. Glad that some of the technology the G+ team works on is helping your son!!!
 
God bless your son and your family..
 
wow that's a great idea! how cool is that! :D Perhaps we could set up different people to show him different things during it? Do it with others also who have similar problems and kids that are stuck somewhere sick?
 
Great inspirational way the Google+ community shines!
 
awww, wow thats so sad God bless the little boy! :(
 
That's a wonderful friend to have.
 
+Frank Garufi Jr. - . I'm so sorry but I haven't been on too much in the last few days and I just now saw this post. I hope Domenic is doing well. What a kind act from John and such a wonderful story. Hope to see you hangin' out soon. Hugs to you and Dominic.
 
My son struggles with Crohn. His last Remicade injection will be in March and later we will have to figure out what to do, as it is not available in Poland within the health insurance for longer than a year. I'm so happy for your son to have access to the best possible treatment. Wishing you both well and lots of other saints for a small hero on his path in the future.
 
What a little star!! Just wonderful!! I went through some scary times with my youngest daughter in hospital and I know it ripped my heart right out of my chest. We got past the worst and when you have children who are chronically ill it cost energy and courage and that's why it is so wonderful to have amazing friends who are there to lighten the load. Sending you a whole lot of positive energy across the pond and huge hugs
 
Your son has been on my mind. I was wondering how he is doing? 
 
I'm so glad I hope he has many more good days ahead of him!!!
 
I got Crohns Disease when i was 18 years old. I went from Asacol to every other medicine up the later and infusions at the hospital because it would not control my disease. I said thats it I am done and just went back to Asacol. I am now 24 years old and still dont have all the control over the disease but I trick my body into takeing a number ascol for a time and then go down in pills of Asacol - it works for me. Working out seems to help lower symptoms and getting the gas out of my body blocking myself up.
 
Michael i wanted to let you know that Pentasa has helped me. The asacal made me sicker. I had to have surgery for it 8 years ago and i done good for about a year or so. It's like some drugs work good for some people and others they don't. I think it is GREAT to hear people talk about it! I had no idea what Crohn's was 11 years ago! I have just about been on every drug they use to treat Crohn's. 
 
+John Butterill You are a sweet angel.
+Frank Garufi Jr. thank you so much for sharing this with everyone, and a thank you to +Dee Solberg for pointing me to it in the first place.

I, like so many others on this thread, have Crohn's as well, and I'll be starting Remicade in about a month or so. I hope I can be as brave as your son. It sounds to me like he has an excellent support system in you, and is luckier than some might think.

HUGS to you and yours and to +Frank Garufi Jr.
 
Wow that's amazing thank you for sharing.... and keep fighting, god bless you and your son.
 
Hopefully did you see "http://www.abc.net.au/catalyst/stories/3269844.htm" also there is a Dutch spoken video on a Belgian site with a talk about the breakthru discovery of 2012 (Science mag.) in a worldwide poop-sample classification project of research prof. Jeroen Maes: where there is no difference between Japanese darmflora and US darmflora, however there are 3 darm eco-systems (just like bloodgroups). And fecal transfusions may also cause Obesity (mice in the video) - http://www.vib.be/nl/nieuws/Pages/Mensheid-valt-uiteen-in-drie-types-darmflora.aspx
 
You are not alone. Thank you and keeps us strangers with you..we will soon be friends. 
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