Hello Everyone....

[CCEffect.org]

Hello Everyone...

I just wanted to introduce myself... My name is Frank Garufi Jr and my 8 year old son, Domenic, has Crohn's Disease. He first started showing symptoms of the disease when he was 2 months old and was finally diagnosed with the disease when he was 3.5 years old.

Almost two years ago I decided to strike back against the disease by becoming an IBD advocate for my son. Advocating on behalf of my son and the millions of people with it has been extremely rewarding. My advocacy has primarily been based upon raising the level of awareness and education around the disease. I strongly feel that we need to make IBD, Crohn's, and Colitis a household name.

If you'd like to see some of the work I've been doing and more background on myself and my son, you can find me here:

Website: cceffect . org
YouTube: youtube . com/fgarufijr
Google+ Page: Google . com/+TheCrohnsColitisEffect
Twitter: twitter . com/CrohnsEffect

Thanks and I look forward to being a member of this community

 

[DustyKat]

Hi Frank and :welcome:

I'm sorry to hear about your lad and to have had symptoms at such a young age too, poor love. :hug:

It is wonderful to read what you are doing for your son and others, kudos to you! I see that you have already found the Parent's forum and we will look forward to having you around and learning more about you and your son.

Would you mind just giving a quick run down on Domenic's history and what his treatment is now (links won't work until you have 10 posts) and although the info can be searched it will be easier for people if you can just provide a snippet. Thanks.

It's good to have you here Frank. Welcome aboard!

Dusty. xxx

 

[CCEffect.org]

Dusty

Thanks so much for the welcome! I appreciate it and your kind words

The "About Us" page on my website ( cceffect . org ) has the long version of Domenic's history and his medications but here is the short version:

Current Medications:
4 week infusions of Remicade
Week injections of Methotrexate (3ml)

Previous Medications:
Pentasa
Flagyl
Cippro
Humira
N.G. Tube Nightly Feedings

Domenic is consider to have severe Crohn's Disease. Because of Crohn's he's also had two fistulas that needed to be surgically drained and have 2 silk stents put in. From age three until age 7 the average amount of days per year spent in the hospital was roughly 80. Domenic has been in remission for roughly 12 months now and it's the first time in his life that he's ever been in remission.

Thanks again for welcoming me and I look forward to being apart of the community

 

[DustyKat]

Whoa, he has been through the wringer and you too no doubt.

It is so good to read he is now in remission and you can both breathe and enjoy life! I hope it lasts a very, very long time, bless him.

Dusty. xxx

 

[DustyKat]

It surely is the most heartbreaking and difficult position to find yourself in when you make what is potentially a life changing decision on behalf of someone else, especially when that someone is a person you love more dearly than life itself.

I know you can never really sit comfortably with the decisions you have had to make Frank because none of us ever know if our child will be that rare statistic. But you had to do something as we all do or Crohn's will do it for us and that outcome is rarely pretty either. My daughter came within a whiskers breadth of Crohn's dictating things, she was undiagnosed at the time, and we very nearly lost her. Even with that scenario the decision about meds wasn't an easy one! Ugh, we are doomed to be forever between a rock and hard place! So I will just go back to my bubble and hide for a while. :lol:

Dusty. xxx

 

[CCEffect.org]

Thanks again Dusty for those kind words.

I believe you are referring to my latest blog post. I honestly wish I had to make the decision for myself rather than for my son. I just hate the fact that we dont have better choices when it comes to making people with IBD, Crohn's, and Colitis achieve remission.

I'm sorry to hear that it was so difficult for your daughter too! I hope she is doing well now!

 

[DustyKat]

Yes Frank, your latest blog post. :ghug: and I agree wholeheartedly.

My daughter had a resection 7 years ago, that is when she was also diagnosed, and she has been in remission since. My son had a resection 2 years ago and he is also in remission. They both take Imuran as a maintenance med.

Dusty.

 

[CCEffect.org]

Wow... Both of your children have it I have two children as well.. Dom who has Crohn's who is 8 and Anthony who doesn't have IBD who is 7. There's days where I feel it's impossible having one of my two children with IBD.. I can't imagine what it must be like to have two children with it!

God bless you Dusty!!!

 

[DustyKat]

When Matt was diagnosed I wondered how I would cope too! :yfaint:

Thank god the ability to cope with what ever befalls your children is endless!

Yeah, it is damned hard and depressing at times but remission surely softens the blow.

Dusty. xxx