SDS Warriors and Angels
Shwachman-Diamond Syndrome Warriors and Angels
There are many children out there who battle this disease called Shwachman-Diamond Syndrome every day. Sadly, many of these brave SDS warriors have lost their lives. Please pray for the families who are going through or who have just gone through bone marrow transplant. Pray for all the families who have lost their precious children.
Angela is a little girl with SDS who went through transplant in Texas. She is now 2 years post bone marrow transplant. Angela had a liver transplant in December of 2007. Her new liver was functioning, but there were some blood cells (male) that were left in when it was transplanted. These cells started attacking her new marrow and Angela was in need of another bone marrow transplant. Angela passed away October 19, 2008.
Dan Robinson passed away on Tuesday, August 19, 2008. Dan was twelve years old and had just completed the fifth grade. Dan loved building Lego’s, watching movies with family and friends, reading, watching plays and musicals, going on field trips to zoos and museums and playing with his little sister, Megan. Our family was blessed to have been able to meet Dan and his family many times over the last nine years. My boys’ most vivid memory of meeting Dan was on our trip to
Throughout his lengthy illness, my boys prayed for Dan daily and lit candles in church for him. A few days after Dan passed away, we were at mass and Joseph leaned over while he was praying and asked, “Mom, is Dan still in the hospital or did he get to go home yet?” He had forgotten that Dan had passed away. My eyes filled with tears as I leaned over and whispered, “Joseph, Dan passed away, remember? He did get to go home to heaven. We need to pray for his family”
Kirk, Roxanne and Megan, all of our love and prayers are with you. We prayed for Dan to be healed on this side of heaven. We, like you, trust in the promises of Christ and know that he has been restored. May God give you the grace and strength you need to bear this loss and grant you the peace that passes all understanding. We love you all.
Danny is a 5 year old little boy with SDS who went through transplant in Cincinnati in October 2006. Danny is back home recovering and is fighting GVHD (Graft vs Host Disease). Continue to keep him in your prayers as he recovers.
All three of the Cox children have SDS.
Baby Jordan is a cute little guy! He has numerous medical problems and his mom keeps everyone updated through his carepage.
Will is 8 and doing great after his bone marrow transplant over two years ago. He had his transplant in Cincinnati on May 11, 2006. You can visit his carepage and read about his journey through transplant. When will met Sean and Joseph, he looked at them and asked, "Which one of you is the donator?" He is precious! The last entry in their carepage is a beutiful testimony to life! Mary, thanks for being a witness to us all!
In February 2007, Brooke celebrated 2 years post-transplant! If you would like to read her journey through transplant, please visit her carepage. Rachel, we Praise God along with you! God is SO good! Brooke is an amazing young lady. In the summer of 2008, she had her leg amputated and is doing well post-surgery. Brooke is an inspiration to us all!
Mikel is a sweet little baby with SDS. His mom recently started a carepage for him. She has pictures of precious Mikel here, too.
Angelica is a sweet little one who lost her battle with SDS. Her father shares Angelica with us all on this website.
Tyler Johnson passed away on September 15, 2000 at the age of 6. Tyler had 2 bone marrow transplants. You can read about his life at the link above.
Katie is now 5 years old. She had a bone marrow transplant in May of 2004 and is still doing well. You'll recognize Katie's family from Mystery Diagnosis.
Read about Quinn's diagnosis and meet her family.
Shwachman-Diamond Syndrome warriors who have lost their battle and do not have a website: Jason, baby Anna (passed away at age 21months), baby Jacob (passed away at age 3), Colleen,Marc, Brendan (passed away age 25), Devin, Jessica, Melanie, McKenzie, Jessica O(passed away at 5 months old), Jessica G, Aley, Beatrice, Heather, Christopher, Nathan, David, and many unnamed others.