Saving Sama- Fighting fatal NPC

Sama's Story

Thank you for taking the time to read about our sweet nephew Sama. He has acquired many nicknames already including; Junior, Sam, Sammy throughout his  journey by those that love and care for him.  Sama was born at 33 weeks via an emergency c-section with fetal ascities and no explanation as to why.  Sama was a fighter from day one, he needed breathing tubes immidiately and feeding tubes until just days before leaving the NICU (we had expected to go home with them!)
{One of Samas first photos after birth}

He spent his first 56 days of life in the University of Nebraska Medical Center NICU.  While in the NICU we learned he had an enlarged liver but no explanation as to why. 

{Celebrating One Month at the NICU}

After coming home Sama went many times a week for months, visiting doctors and specialists for a solution to all the medical issues he was having. 

{Home from the NICU!!}

At just 16 months, he was diagnosed with a very rare disease, NPC (Niemann Pick Type C). All diseases are awful, but this terrible one attacks children and is known as “children’s Alzheimer’s”. Unfortunately, there is not a cure for this disease yet. When his parents were given the news, they set out to find him help and found that in Dr. Elizabeth Berry-Kravis who specializes in NPC and is the co- principal investigator for a trial medication VTS-270. VTS-270  would help with the symptoms of NPC in hopes that this sweet boy would carry out a “normal life”.

{Christmas morning with his cousins}

Without this medication, he does not have a chance at survival. Anyone who meets him instantly falls in love with his smile and contagious laugh and we know that he is meant for great things. He will celebrate his 2nd birthday on April 19th and although he likes what most kids his age love like playing with play doh and  dinosaurs, he LOVES tickling people and watching them laugh. He also loves vegetables, especially broccoli (what kid loves broccoli?!?!) but he also loves chocolate and ice cream like most kids!

{Practicing Walking with a walker while waiting to meet Dr. Kravis!}

We are so blessed that Dr. Berry-Kravis worked with the FDA on approval to get access to this medication outside of the trial due to his young age and we appreciate the willingness to take his case on and administer this treatment. The treatments will be performed at Rush Hospital in Chicago, IL; that is 8+ hours away from home and require bi-weekly spinal taps to administer the medication. As you can imagine, he will need recovery time each week before being able to travel back home. The cost of this medication itself is provided (during the trial) by Vtesse pharmaceutical (THANK YOU!) however the administration of it, hospital,  and doctors’ fees are not covered and are completely an  out of pocket expense in addition to the cost of travel bi-weekly to get this medication administered. This family has a great support system around them full of people that love him so much both near and far but unfortunately the cost of these treatments is a heavy burden and along with travel to get our nephew the medication he needs to survive. Please take a moment to say a prayer for our sweet nephew and please consider donating to help with medical expenses and travel so he can get his treatment which is literally the difference of life and death for him.

{Practicing walking with our cousins}

As his aunts and uncle, we want to relieve any of the burden for their family as much as possible and hopefully reduce some of the stress in having to also worry about how to pay for his necessary treatment. Please consider donating, every bit helps. Thank you for following his story and your willingness to be a part of helping such a special sweet little boy. His parents are doing everything they can for him and we hope that each of you can help us make things easier during this difficult time. They are currently in the process of trying to get the medication here locally but could take up to one year to be approved and he doesn’t have the luxury of time.

{Family photos with Mom & Dad}

Thank you to everyone who loves and cares for Sama. He is such a special part of our lives. It is difficult to ask for help in these times but we hope that you will consider the difference it will make in his future.  We want to also thank his doctors; Dr Ruben Quiros and Kristen Madden who were so persistent in helping get a diagnosis for him, Dr Elizabeth Berry Kravis of Rush Medical Center who will be working with his parents to treat him in Chicago, Children’s hospital and Dr Rickard  who is currently working hard and fighting for his case to get approved so he can be treated locally, and a special thank you to Dr DiRenzo Coffey of Boys Town who was been by their side from the beginning to help ease the stress for Osama and his parents. She has become such a special member of their family support.

{Waiting for our first treatment to start, Feb. 14th, 2018}

Thank you and we hope you continue to follow his story and share. We also need to spread the awareness of this vicious disease! If you are unable to donate, please like, follow and share to others to help us spread the word.

{Even though I'm getting big I still love to cuddle with mom and dad!}

We have included a few links to share and we hope that you will take some time to read

-          Vtesse (now has been acquired by Sucampo Pharmaceuticals, Inc.): This is the wonderful Pharmaceutical company who is conducting the phase 2b/3 clinical study of VTS-270 for NPC patients

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-          Rush Hospital News story: One of his AMAZING doctors; Dr. Elizabeth Berry-Kravis, MD, PhD is the co-principal of this trial and has been so helpful in working with us to get compassionate use of this medication called cyclodextrin.

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-          Niemann Pick Disease Foundation: This foundation has provided anyone interested including friends and family resources to learn more about the disease and different options. They have been a helpful resource.


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