Update on Sam

Welcome Family and Friends,

Sarah and I decided to create this site to update you on Sam.

First and foremost, Sam is a child of God loved by us, by Jesus, and many many others.  Through baptism, God has claimed him as His own and Sam has been blessed now with new life and will be blessed more fully when God calls him home one day.  It is only because of God’s promises, God’s grace, and the strength that He provides, that we can share with you this update on Sam.

As of last Friday (Jan. 17th), we finally heard back from the doctor on a big test that we had done.  After nearly a year and a half, we received confirmation on a diagnosis.  However, this news was and is extremely bittersweet and is difficult to hear.  Sam has been diagnosed with NCL syndrome which is short for Neuronal Ceroid Lipofuscinosis.  In older children, it is more commonly known as Batten’s Disease.  There are four types of NCL and it is categorized by the age at which someone starts showing symptoms.  Sam falls somewhere in between Infantile and Late Infantile NCL, but most likely has the infantile type.  While research is still being done, there are no known cures or treatments that can either halt or reverse NCL.  Rather than spell out all the details of this syndrome, here are some links that explain it in more detail, including the affects of the syndrome and what it most likely will mean for Sam.

http://www.ninds.nih.gov/disorders/batten/detail_batten.htm
http://www.bdsra.org/

Words cannot due justice to the amount of love and support that we have received from family, friends, and the community at Memorial Lutheran Church.  We know that this news breaks your hearts, as it does ours, and I’m sure that many of you will want to know how you can help Sam.  We have an appointment with our genetic doctors in a few weeks.  We are hoping to hear more detailed information from them on how to best care for Sam moving forward.  In the meantime, the biggest thing you can do for us and Sam is to pray and continue to love him as we do.  Pray for healing, if it be God’s will.  Pray for comfort for Sam and for strength for Sarah and I.

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10 thoughts on “Update on Sam

  1. Jimmy & Ann Adele Ross says:

    Nathan & Sarah, We are so sad to hear this news. Having lost a child at birth was hard enough for us, but we can’t imagine the feeling of knowing you might lose a child you have grown to know & love. We pray that our merciful Father will carry Sam & both of you in His loving arms throughout these difficult days ahead. You have lots of prayers going up for all of you and we firmly believe in the power of prayer. May God bless you all.

  2. Molly Nash says:

    My heart breaks for your little family to hear that the suspected diagnosis for little Sam has been confirmed. When I received word that my daughter Pam’s baby would be stillborn, the Methodist minister at the church where I worked came immediately to offer comfort. He reminded that we don’t know why these things happen, but we do know that sin brought death and destruction into the world. Yes, we know that, but how could the sins of the world bring destruction to a child so young he could not possibly have ever sinned by thought, word or deed, or to my grandson and the Ross baby who never experienced the light of day? We’ll never understand why such bad things happen to good people, but we do know that one special little boy was given to two very special parents. With he help of God and the love and prayers of family and friends, may the three of you be strengthened to meet the trials ahead.

  3. Jaime christ says:

    I am praying these promises for Sam and you: that day by day, Sam is being inwardly renewed by Jesus (2 Corinthians 4), and that in our weakness Christ is made strong (2 Corinthians 12). Praying for you all from Buffalo.

  4. Diane Giovenco says:

    My heart is heavy upon hearing this news. I will continue praying for all of you as I have been.

  5. Dawn Cochran (Bergmann) says:

    Nathan, we know that we serve an all knowing, all loving God, yet we don’t always know why he puts us through these situations. Just remember that he never puts more on us than we are able to bear. I will keep you, Sarah, and Sam in my prayers and put him on other prayer chains that I know of. I will be lifting your family up frequently. I will look forward to reading many praise reports as they come in!!

  6. Liane says:

    I don’t know what to say to you. I will keep you all in my prayers. God’s blessings to you!
    Love, Liane Figur

  7. Brenda Davis says:

    I love Sam very much and I’m comforted that God loves him even more! He will continue to be with Sam and both of you. You know I am always a phone call away!

  8. Brian Engman says:

    Thanks for putting up this site. I literally cannot express how my heart hurts at this news. Sam’s diagnosis really illustrates to me the difficulty in accepting the truth of Romans 5:3. I’m trying, but it’s a challenge. I am so proud of how strong God has made you and Sarah to see God’s grace in all this. I love you and am praying for His mercy and peace to you in the weeks/months/years to come. Kyrie Eleison!

  9. Tom & Joanne says:

    Nathan & Sarah – Joanne & I are in thought and prayers for Sammy & both of you as parents. We especially pray the Lord help & comfort Sammy guiding the medical support he needs. May The Lord comfort you during this time of trial.
    God Bless your family,
    Tom & Joanne

  10. We have and will continue to keep y’all in our thoughts and prayers. If you need anything just let us know. Sam is also blessed with 2 amazing parents and I admire you both for everything you’ve done and will continue to do. We love y’all.

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