Jenny Christiansen
My 3-year-old son Teddy was recently diagnosed with DC/HH and is currently at home, although he is waiting for BMT at University of Minnesota this fall/winter. While we wait, Teddy’s receives regular blood transfusions to offset the effects of bone marrow failure. Additionally, he must receive blood when he undergoes esophageal stretching necessary to counter a congenital esophageal stricture. Sadly, his identical twin brother passed away at 3 months old from complications due to whooping cough.
Although Teddy had undergone genetic testing for DC, none of the four genes screened were found to carry the mutation.
For all of the physical and developmental hurdles facing Teddy, he thrives in the love of his family and the ruckus associated with having three siblings.
We would be willing to and wish to talk with others who may have walked or are walking the same road. Thank you!
UPDATE:
My son Teddy underwent an unrelated donor, BMT (bone marrow transplant) on Nov 6, 2009, at the University of Minnesota, Fairview, under the care of Dr. Jakub Tolar. It was successful and he is on day +104 today (2/19/10). He is happy, energetic and 100% donor DNA bone marrow which is working well and getting better everyday. He has a caringbridge site which I don't mind sharing as well. www.caringbridge.org/visit/teddychristiansen
jennyc123@comcast.net
