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11/18/2009 06:24 AM

Fund Raiser for Crohn's!

ab51304
 
Posts: 17
New Member

Fund Raising website: www.scentsy.com/aliciakaye

Go to the website and scroll down in the box that says "My Open Parties" until you see Crohn's Fund Raiser, click on "buy from party" and then shop for all your Christmas or personal needs! UPDATE: OR YOU CAN CLICK THIS LINK: https://aliciakaye.scentsy.us/Buy?partyId=1594641

The stocking stuffers are awesome and are only $3-$8!

First of all, let me say thank you to all the wonderful people here who have given me guidance and hugs through my ordeal. It's been rough and seems to be getting worse.

Our little girl is getting so big (b. 9/8/09) and her big brother (b. 10/21/06) is such an amazing help. I had to go back to work so I could try and bring down the mountain of hospital bills sitting on my kitchen counter. My hubby still hasn't gone back to work. He weighs about 110lbs now and is in bed about 22 hours (or more!) a day. We are about to lose our apartment because we can't make ends meet. My dad and brother are moving to New York to try and help us out but that is still months away.

The doctors can't find a way to treat Benjamin. Remicade, steroids, antibiotics, Humira, 6mp, everything has failed. He's developed more abscesses in his throat and perianal/rectal area. The ulcers have ravaged his entire intestinal tract. The rashes all over his body cause him great discomfort. Two of the most basic actions to sustain life have been taken from him. He can't eat/drink and can't go to the bathroom without extreme and excruciating pain. We have tried everything. Even chiropractic care, acupuncture, diet changes, and just feeding him intravenously to keep him alive.

We found a doctor in Florida who is a leader in the field of Crohn's and we are taking a trip there December 2nd to 6th. He isn't covered by our insurance and we are going to have even more bills piling up. His GI specialist says he's never seen a case of Crohn's so aggressive and we need to find a treatment fast.

So, to the point of all this- I am putting together a fund raiser to help cover his bills. I need to find someone who can help him because if I don't, we'll lose him. With two small children and working a menial job, I won't be able to support my family. I tried to apply for state aid but was denied because they said he wasn't "actually dying/terminal". His doctors haven't considered his condition as terminal or disabling so we also can't get disability.

The fundraising site is https://aliciakaye.scentsy.us/Buy?partyId=1594641

If you aren't familiar with Scentsy products, they are amazing. They have the holiday collection out now and the scents are delicious. It is a flameless, wickless, sootless, candle. It has real wax that melts into a warm puddle. It doesn't get hot so if you have pets or kids they won't get hurt. If it spills it simply peels up. Doesn't crack and break all apart like regular candle wax. I get 20% off all the sales. Anything that is extra and left over from the cost of the trip I will donate to the CCFA. It's very important for us to get to Florida to see this doctor. Even if it means going bankrupt and living in a shelter for my family. We are in NYC and I have no family here until my dad can come so if I lost my husband I don't know what I would do.

Thank you for all your help, prayers and support!

Post edited by: ab51304, at: 11/20/2009 02:05 PM

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11/18/2009 06:41 AM
libit
libit  
Posts: 2449
Group Leader
I'm an Advocate

ab51304 words cannot express how bad I feel for you and your family. I know we have been corresponding back and forth and I was hoping he was doing much better. I'm so glad you're Father is coming to help out. No one in this country should be facing what you are and your husband are. I will definitely order something from the site to help in whatever way I can. Please know that your family is in my prayers and I sincerely hope that the trip will provide some much needed help for your husband.

11/18/2009 06:47 AM
ab51304
 
Posts: 17
New Member

Thank you! You have been tremendous support through this whole ordeal. I will get him better, even if it means traveling to the ends of the Earth and back! I couldn't imagine losing him. He's the most amazing man I've ever met. He's truly my soul mate. Our children need their father and my poor baby girl can't lose him, she's barely been able to see him with all the hospital stays! I've tried to get as many pictures and videos as I can of all of us together. I hope this doctor in Florida can help!

HUGS

Alicia


11/18/2009 08:04 AM
libit
libit  
Posts: 2449
Group Leader
I'm an Advocate

Alicia I have emailed your story along with the request that my friends and family try ordering something no matter how small to help you and Benjamin out. I truly am hoping for a miracle for Benjamin. Stay strong it is evident you are truly a very supportive wife and Benjamin is very lucky to have you. God bless you both.

11/18/2009 08:10 AM
ab51304
 
Posts: 17
New Member

Oh my! Thank you so much! That's means so much to me. I know we will beat this as long as we stay positive and work together. The docs have given up on him but I never will!

11/19/2009 05:55 AM
libit
libit  
Posts: 2449
Group Leader
I'm an Advocate

As hard as it is for Benjamin he must try and keep his positive attitude. And fight. This is a battle that few could handle emotionally as well as physically.

11/20/2009 02:03 PM
ab51304
 
Posts: 17
New Member

This is the direct link to the Crohn's fundraiser:

https://aliciakaye.scentsy.us/Buy?partyId=1594641

Benjamin went back to the hospital by ambulance last night. His stomach was starting to hurt and then within minutes he went in to use the bathroom because he said he felt a very sudden urge but the only thing that came out was a blood clot the size of a tennis ball and lots of blood. He crashed in the ambulance on the way to the hospital and couldn't stay conscious. He's doing a little better now but no one can give us any information as to why he dropped off again. They can't see anything on X-ray, CT or MRI. I'll let you know when I know! They weighed him and it is worse than I thought, he's down to 108lbs.


11/20/2009 02:30 PM
LaurieD
LaurieD  
Posts: 86
Member

I am so sorry to hear about what your husband is going through. I hope this time in the hospital he will get treated with the correct meds and get to feeling better. Just keep yourself strong for yourself, Benjamin and your kids. Please let us know any updates on him. My thoughts and prayers are with you and your family.

11/20/2009 08:46 PM
ab51304
 
Posts: 17
New Member

So far his bleeding is undercontrol. At this point the docs have not cut into his bowels but he has had two surgeries in his rectal area because of the extent of the damage from the abscesses. They haven't wanted to cut into his intestines yet because it is so irreversible and they are hoping/relying on finding a medication before cutting. I'm not entirely sure what we are waiting for other than the ulcers, infections, abscesses and fistulas he develops from the slightest amount of injury has been catastrophic and they are worried if they do surgery it will kill him. His body rejected the drains and the seton band they put in place for the abscesses and it resulted in him being put in the ICU and having two blood transfusions and a mild heart attack. We are being referred to two specialists, one at Mt. Sinai and one at Cornell. Both don't take our insurance. I'm losing my apartment January 1st. I just put in my notice to the land lord today. We can't make the rent and although they have been phenomenal (I still owe from OCTOBER!) I can't put them out as well. My inlaws have offered to let us stay in the basement of their house until we can find a solution. The doc said they aren't hopeful they will find a way to help him. They said if they can't stop the destruction of the tissues and his organs shutting down it won't be too much longer. I agreed to go stay with my inlaws (I adore them so it isn't bad) because if I lose my husband I will need more help than I know I can fathom at this point. I'm praying that we find something in time. I am praying that this doctor in Florida can do something or the docs at Mt. Sinai or Cornell will have an answer. They've done celiac sprue, small bowel, numerous colonoscopies and endoscopies, fluoroscopy, CT, MRI, XRay, etc. I'm surprised he doesn't glow in the dark and pop bags of popcorn!

Anyway, any help is greatly appreciated. I don't make much working at Target as seasonal part time and the state of our country is such that I can't receive any aid at this point.


11/21/2009 08:34 AM
LaurieD
LaurieD  
Posts: 86
Member

I think I would have to agree with Nick on the surgery part. That may be his only option left that will save him. My thoughts and prayers are still with you and your family. I hope your husband pulls through this. Good luck. and Please keep us updated on how he is.
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