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Samuel’s Story

Our site was created to keep family and friends updated about Samuel and his journey for a cure from NEMO, a rare and severe immune deficiency.

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After years of trying to conceive, we were graciously blessed with the news of a pregnancy. Samuel Ernest Dunbar was born on October 30th, 2005, weighing in at only 3# 7oz. After 1 month in the NICU, we brought him home and watched in awe as he was gaining weight and growing so fast. At 5 months of age, Samuel was admitted to Presbyterian Hospital in Albuquerque with the diagnosis of pneumonia. After several days of antibiotics, Samuel's pneumonia was worsening. He was transferred to the PICU where a bronchoscope was performed; a rare pneumonia was found, so the doctors started a workup on Samuel's immune system. On May 1st, Samuel was flown to The Children's Hospital in Denver where a more intensive immune workup was done. The lab work for immune deficiencies has to be sent to different areas of the country, so it was weeks before we had any results. Finally, at the end of May we had a diagnosis. It is a severe immunodeficiency called NEMO and the diagnosis of NEMO is relatively new (within the last 5 years). We currently know of only 12 boys in the United States (70 in the world) diagnosed with this and the only cure is a bone marrow transplant. NEMO is the name of a gene that regulates functions of the immune system. NEMO is like a master switch that is found on the cell of the human body and regulates signals between the cell membrane and the cell nucleus. NEMO is expressed in almost all tissue cells. If NEMO is not present, life is not possible. NEMO stands for Nuclear Factor Kappa B Essential Modulator. Thank you for keeping Samuel in your prayers each day. "Therefore I tell you, whatever you ask for in prayer, believe that you have received and it will be yours." Mark 11:24

Latest Journal Update

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Hello family and friends,

Sam, Madeline, grandma Cheryl and I traveled to Denver last Sunday through Tuesday.  Sam had his 6 month checkup with Dr. Ralph, and had some labs drawn.  We were told by one of our favorite doctors that Sam looks perfect--absolutely wonderful words to our ears!  It seems like we will follow up with BMT every 6 months this year, then every 9 months next year, then yearly until we hit 5 years post-transplant.

I was very excited to make the trip to Denver--besides being one of my favorite places, we were able to have dinner with my cousin; play in the beautiful parks; visit the aquarium, and see our friends at Brent's Place and at the hospital.  But, the most wonderful thing about our trip, was meeting up with an amazing family--The Merriman's.  Their son, Jackson, has the same immune deficiency that Sam had--NEMO.  They have relocated from Texas to Denver, as Jackson will soon undergo a BMT with the hope that he will be cured from NEMO.  They are in the pre-BMT workup phase right now, and will be admitted for transplant on April 12th.  They will be away from their home, and staying at Brent's Place for 4-6 months, and I ask that you please pray for our little buddy and his family!  They are so very sweet, and scared, and excited, and hopeful--they are experiencing all the same emotions we went through just over 2 years ago.  You can visit Jackson's website and leave them a message of encouragement if you would like--www.caringbridge.org/visit/jacksonmerriman
Praise be to God, for bringing such wonderful friends into our lives!!

We are going through many changes right now---we have sold our house, and are currently looking for a new one.  We are hoping to stay in the same area so Casey doesn't have to change schools--it is a trying process, but we are very thankful for the opportunity to move into a place with more space--both inside and outside. 

Casey is nearing the end of 1st grade and is loving gymnastics--her coaches wanted to move her up to level 4, which means practice 3-4 days a week, 3 hours a day; plus, level 4 gymnasts compete.  Given that information, we decided to keep her at a level 3 for now, since she is still a young 7 years old--we want her to enjoy what she is doing1  Samuel enjoys very much playing with his baby sister--he has grown 2 1/2 inches in the last 6 months, but is still on the small side for weight.  That's not bothering anyone though, since he has SO much energy and is full of life--he is telling funny stories and jokes, and is sharp as a tack.  His memory is amazing (he gets that from Will!).  Madeline just turned 8 months old, is crawling and pulling herself up on our furniture, and is absolutely a happy and healthy baby!  We are so blessed.

Since we often don't have much medical information to communicate to our friends and family, I have decided that this will be my last journal entry on CaringBridge.  This is a positive step for us, as we will continue to grow in 'normalcy'.  This website has been so valuable to our family, often times carrying us through very difficult and dark times.  Reading all your entries encouraged us, and blessed us.  Journaling was like a therapy for me, as I would just start typing and let out a lot of my emotions during transplant.  Thank you.  Thank you for all your support shown on this site!  When, and if, we hit 85,000 visitors, I am going to have everything on this website printed and bound into a book.  It will be something to be treasured for the rest of our life.

Today I ask for prayers for continued protection for our family.  I also ask for prayers of healing for our dear friend, Jackson, and for complete healing for all our wonderful NEMO families.  Thank you Father, for carrying us each and every day.  Thank you Father, for bringing such wonderful people into our lives!

God Bless,
Kelly