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Support 4 Sami

$40,087raised of $75,000 goal
53%

Organizer: The Bernadzikowski's Beneficiary: Samantha Bernadzikowski

Even though we have reached our goal, we will keep this site up and active as a means of continued support during this long journey. Again, THANK YOU ALL!!!!!

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Fundraiser Details

Samantha is still going to Boston Children's Hospital every 3 to 4 months to have her Pulmonary Veins dilated. She continues to take Gleevec, which is currently being supplied by the hospital as our insurance will not cover it. As of October the hospital supply expires and we are on our own to pay for this drug. They say it coasts over $40,000 a year for this medication. Thank you for your help!! - See more at: http://www.youcaring.com/medical-fundraiser/support-4-sami/70443#sthash.9K7v6skb.dpuf
Samantha is still going to Boston Children's Hospital every 3 to 4 months to have her Pulmonary Veins dilated. She continues to take Gleevec, which is currently being supplied by the hospital as our insurance will not cover it. As of October the hospital supply expires and we are on our own to pay for this drug. They say it coasts over $40,000 a year for this medication. Thank you for your help!! - See more at: http://www.youcaring.com/medical-fundraiser/support-4-sami/70443#sthash.9K7v6skb.dpuf
Samantha is still going to Boston Children's Hospital every 3 to 4 months to have her Pulmonary Veins dilated. She continues to take Gleevec, which is currently being supplied by the hospital as our insurance will not cover it. As of October the hospital supply expires and we are on our own to pay for this drug. They say it coasts over $40,000 a year for this medication. Thank you for your help!! - See more at: http://www.youcaring.com/medical-fundraiser/support-4-sami/70443#sthash.9K7v6skb.dpuf--------------------------------------------------------------------------------------------

Sami continues to battle the PVS (Pulmonary Vein Stenosis) strong and hard for a happy life and we are going to do everything we can to help her.  We need your help to get her the ChemoTherapy drug called Gleevec.  Our insurance is refusing to pay for it but it is saving her life even as I type this.  The out of Pocket cost for this drug is over $50,000/year at her current dosage.  If her size or weight goes up, her dose goes up with it.  The next dose up, which we anticipate in the next several months,  would raise the cost to approximately $75,000/year.  We need your help.  Please help us do our part in Sami's fight for life.  She is fighting hard.  We need to give her the weapons to wage the war.  We beg for your generosity as well as the power of your words..... Spread the word to everyone you know, and ask them to help us support Sami. 

Here is her back story!

Samantha was BORN with a condition called Heterotaxy that caused several heart defects which she has undergone 3 open heart operations to correct. The first was the BT shunt. The second, the Glen. The third was the Fontan. ALL of these operations were successful...

Samantha NOW has developed this condition/disease of Pulmonary Vein Stenosis. There are several degrees of the severity of this disease and Samantha's is one of the most aggressive and severe. This disease is extremely dangerous and does not have good survival odds. Samantha's anatomy is very unique and therefore, there is no previous case EVER like Samantha's to draw data from. The only option for Samantha was surgical intervention by way of the Sutureless Vein Repair. The repairs odds of longterm success are 30%. What that means is that after 5 years, only 1 out of three patients with this repair are still alive.

If this vein repair does not work, the only other option is a Heart AND Lung transplant. This disease removes any possibility of a Heart Only transplant. Heart-Lung transplants are extremely rare. Only 4 Hospitals in the country are capable of doing this and the closest is Philly. We have been advised that we should not actively persue getting Sami on the transplant list until there are signs that the desease is reoccuring. If Samantha does not have reoccurrence of the vein stenosis, and it does not spread beyond the repair, she will not be placed on the list. If things worsen and she gets on the list, it is at least a 2 year wait before you get to the organs.....if you get them. And given how young Samantha is, it is even more rare.

During Samantha's 4th operation, in order to get to the Pulmonary Veins to repair them, the surgeon DID have to reverse what they did during the surgery in January - the Fontan. The reason is that the "Fontan circuit" literally sat directly in front of where the 4 pulmonary veins connect to the heart.... To clarify, if they were able to work around the Fontan and do the Pulmonary Vein repair, they would have. The success of the repair did not rely on the Fontan being reversed. It was just simply in they way. And, the repair was more important, and actually life saving for Samantha to be taken back to the "Glen" stage and have the repair vrs keeping the Fontan and not having the repair. Also, they felt that taking down the Fontan, repairing the veins, then redoing the Fontan all in one shot was just too many major reconstructions for one surgery and it would have made her recovery longer and/or harder.

We will be redoing the Fontan surgery at some point in the future, unless the need for a transplant happens first. Right now we will be watching to see how her Pulmonary Veins react to this repair. The thought process is that we will let her go as long as she is doing well. If her Pulmonary veins are still doing well in 2 or 3 years, then we will assess the need for the Fontan. Or, if she starts to "get blue" before then, we will assess the need for doing the Fontan.

The plan right now is more or less the standard recovery plan. There are many hurdles for Samantha to overcome on the road to recovery. She has ALWAYS amazed us with her strength and speed at recovering from these operation. The good news about being back to the Glen, is that there is much less pressure in the heart and lungs and therefore, the fluid production should decrease much more quickly and therefore the chest tubes will hopefully come out in a much shorter time frame. Time will hopefully prove this correct.

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Updates

Updates

06/13/2014
by The Bernadzikowski's

As we mentioned when we kicked off our fundraising campaign, we were exploring every avenue of help we could think of. Yesterday, we got a phone call from Boston Children's Hospital. The drug manufacturer, who we reached out to, is going to provide assistance with Samantha's drug needs.

In addition to that, we received several EXTRAORDINARY donations yesterday. Between the assistance from the manufacturer and the TREMENDOUS outpouring of support from our family, friends, coworkers, and the entire community,
WE HAVE ACHIEVED OUR GOAL!!!!

Shannon and I are still reeling from all of this amazing news that all just hit us yesterday. This is almost unbelievable.

We would like to offer our most sincere thanks to ALL that have been involved in accomplishing this goal. We truly did not know if it could be done, let alone as quickly as you all made it happen.

A special shout out and THANK YOU to William Warren and the entire Alvarez family, to the entire Fireline Family....especially Sharon, Anna, Shannon, Lisa, and so many more..., to the Pyne family, and to everyone that put in the work and contributions to achieving this goal, THANK YOU ALL!

Words Just don't seem able to express our feelings about all of you. We are truly blessed to have such support from our community.
THANK YOU THANK YOU THANK YOU THANK YOU THANK YOU


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05/29/2014
by The Bernadzikowski's
Sorry for the wrong information in he previous update... The hospital thought they had enought to get through til October, however it actually runs out August 31st. A whole month less then what we thought.
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05/15/2014
by The Bernadzikowski's
Samantha is still going to Boston Children's Hospital every 3 to 4 months to have her Pulmonary Veins dilated. She continues to take Gleevec, which is currently being supplied by the hospital as our insurance will not cover it. As of October the hospital supply expires and we are on our own to pay for this drug. They say it coasts over $40,000 a year for this medication. Thank you for your help!!
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11/22/2013
by The Bernadzikowski's
Samantha just had her second Cath, in 2 months, at Boston Children's Hospital. We have been driving there (from Maryland), which is about a 6 to 7 hour drive, and we've been staying in a hotel. We are planning on being back in Boston in another 3 months for a 3rd Cath and balloon dilation of her Pulmonary Veins.

Thank you for all of your support!
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09/17/2013
by The Bernadzikowski's
Sami and family will be heading to Boston next week for a second opinion and possibly being entered into a clinical trial using a chemotherapy drug called Gleevec. Bostyon Children's Hospital is one of the top children's hospitals in the US and the top in Pulmonary Vein Stenosis research.
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07/09/2013
by The Bernadzikowski's
Good afternoon. Thank you to everyone who has helped and shared this site with your family & friends.... Some people have asked what this money will be used for. We plan to use it for food,  to help with the purchasing of the 9 different medications Samantha is taking on a daily basis (co-pays add up quicker then you may think!), and to help us catch up on bills that have accumulated while Sami's been in the hospital and we've missed significant amounts of work.

Samantha is doing well since coming home on the 4th... however we have a long way to go to get her strength and weight back to where it was before this all began 6 months ago. We are continuing to spend as much quality time with her as possible and watch her closely for signs that the Pulmonary Vein Stenosis might be returning - which we are hoping and praying we never see!
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