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The Koumpouras boys web-site (Sanfilippo Syndrome) 
Hermes and Aristofanis
(first days in the PBMTU)
Welcome to our Children's Web Page. It has been provided to keep people updated about their cord blood transplant in DUMC.
Hermes and Aristofanis Koumpouras come from Greece . Hermes was born on February 28, 2000 in Athens and he was diagnosed with Sanfilippo syndrome (MPS IIIb) on December 3, 2002. His Brother Aristofanis was born on October 24, 2001 and was also diagnosed with the same disease.
The Sanfilippo Syndrome is a rare metabolic disease (it affects one in 70,000 live births).It is genetic, which means that the children inherit it from their parents (there is a one in four chance with every pregnancy). Sick children are missing an enzyme that prohibits the built-up of a specific chemical in the body, called heparan sulfate.
This building up itself is not toxic but the effect of storing it in the body lead to many physical and mental problems.
The boys with their parents Savvas and Marianna arrived in the U.S. on January 24, 2003 in order to receive a cord blood transplant in DUMC.
The children were admitted in the PBMTU on March 3, 2003 and both had their cord blood transplant on March 13, 2003. Aristofanis did well, he grafted on April 8 and he was discharged on April 24, 2003. Unfortunately he got sick two weeks later and he was readmitted in the PBMTU on May 16. A week later he was transfered into the PICU and on May 30, 2003 he passed away. Officialy the cause of his death was liver failure, which was the result of infection. An autopsy was performed to determine the cause of the infection but no results yet. We hope that we will know by end of June.
Hermes' first transplant was not succesful (he never grafted because of a virus) and he had a second transplant on June 4, 2003. He has developped a very bad mucositis which made his breathing very difficult and he was transferred to the PICU on June 15. He has been there since then.Please check the journal for future updates.
Journal
Saturday, July 19, 2003 5:02 AM CDT Dear friends
it is some time since i have not updated our journal but i was feeling there was not much to say.
We arrived to Greece on the 3d of July and our precious Hermes was buried on Saturday, July 5. Our babies are sleeping, side by side, at the municipal cemetery of Lamia, the town where they lived their short lives.
We would like to thank all of you for signing our guestbook. While we were in the U.S. we did not have the time to meet other parents with transplanted children. Being in a foreign country with two sick children was very hard. We just did not have any time to do anything else but taking care of our children. But we are happy now to see, that so many people that we just met in the hallway are signing our guestbook. It is a great support for us and we will ever be grateful.
We check the websites of all the transplanted Sanfilippo children almost daily and we pray for them to do well. We also check the websites of some children that we met while we were in the 5200.God bless all of them!
We have not yet had the chance to meet our doctors here in Greece and talk with them about our children and the treatment that they had at Duke. We are looking forward to it, not only because these doctors helped us enormously when we decided to go to Duke, but also because they are excellent doctors and we would like to hear their opinion about our children's transplants.
In Athens Children's Hospital "Agia Sofia" there is a PBMTU and they do bone marrow transplants to children with leukemias, immune defficiencies and thalassaemia. Although they do not have any experience with metabolic diseases , their opinion is of great importance to us.
We would like to send our warmest regards to all of you.
Marianna.
P.S.I sent messages to some friends yesterday. Could they please let me know if they received the messages ? (e.x. Mandy, Latane, Emily.B., Cathron, Julie.B., Angie ).Thanks.
 Look at past journal
entries
Hospital Information: Patient Room: 5210
DUMC
Durham, NC, 27710
919-681-5210
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