Family Stories

Dyskeratosis Congenita Outreach was designed for patients who would like to contact other patients and discuss their experiences and treatments.

If you would like to submit your information to contact someone, or be contacted please submit the form located . This form will also allow you to submit a story about your experience with DC.

When she sets her mind to something, Robin Huiras, a DC survivor for 30+ years, won’t let anything stand in her way -- including undergoing a bone marrow transplant and having a child. To read her full story, click here.

Jennifer is mother of two boys affected by DC. She is concerned about their symptoms, but hopeful for their futures. She would love to talk to other parents about treatments and medical care and can be reached at smurfette3811@earthlink.net. Read her full story.

Becky’s son Jesse was diagnosed with DC in 2005 after years of unanswered questions and misdiagnoses. She is grateful for small victories and considers each day a gift. Becky is willing to speak with other parents and patients about DC and hopes that by sharing information more can be learned about the disease. She can be reached at johnsdx@hotmail.com. Click here to read their story.

In August 2006, the life of Lily Jean Wahl, mother of six healthy children, was forever changed when her son Levi was born with a suspected diagnosis of DC. Although Levi has struggled with DC’s effects, he remains a happy child. Lily would love to be in contact with others who share her family’s experiences and can be reached at slwahl1@juno.com. Click here to read her full story.

In 2005, after battling DC for most of his life, Coulter passed away. His mother Nikki carries on his fight today. Read more about them.

Beating the odds again and again, Alexander has fought DC since he was 18 months old. Born in 2000 with developmental delays due to oxygen deprivation in the womb, Alexander finds joy in life’s simple pleasures and continues to make progress despite his health concerns. To read his story, click here.

Without a doubt, Alexander’s zest for life and tenacity are gifts that will serve him well as a DC patient. Like many youngsters with DC, he is treated as a normal child who sees the doctor more than other kids. To learn more about him, click here.

Jen’s son has been dealing with the effects of DC since he was born. She would like to talk to other parents about different treatments and can be reached at bathpirates@hotmail.com. To learn more, click here.

Jenny and Brad Christiansen’s entire family is impacted by DC. Although their son Teddy was only recently diagnosed with the devastating Hoyeraal-Hreidarsson variant of DC, they have been fighting the symptoms of the disease since his birth. However, he recently survived a very successful bone marrow transplant. Jenny is eager to talk with other families with similar experiences and can be reached at jennyc123@comcast.net. To read about Jenny and her family, click here.

Daniel Yara is a survivor – not only has he flourished since undergoing a bone marrow transplant in 2000, but his recovery to date from a February 2009 double lung transplant -- required to combat devastating pulmonary fibrosis --has astounded his doctors. While some might imagine two such transplants would slow a patient down, the procedures have fueled Daniel in his fight with DC. Read his full story here.

Tamara Weatherford had four children, 3 of them have DC. One child passed away from complications due to DC and the youngest is facing a bone marrow transplant. She would love to hear from other parents who have faced this disease. To read Tamara's story please click here. Please read her latest update as well.

Anna is 12 years old. At 20 months she was diagnosed with myelodysplasia and in 2001 received a successful BMT. In 2009 she was diagnosed with DC after beginning to show various symptoms. Read what her mother writes about her struggles here.

Elizabeth is 18 years old and at the time of this posting (5/2010) is undergoing a BMT at Minn. Her mother, Marsha writes about her experience here. You can also follow her blog and her address is at the end of the story.

Shirley's middle child, Ryan was just diagnosed with DC in Sept of 2009. You can read her note and get in touch with her here.

Family Stories

Charlie & Nancy Cornelius

Disclaimer: Medicine is a constantly changing science and not all treatments are clearly established especially with such a rare disease. New research changes drug and treatment therapies daily. The authors, editors, and publisher of this website have used their best efforts to provide information that is up-to-date and accurate and is generally accepted within medical standards at the time of publication. However, as medical science is constantly changing and human error is always possible, the authors, editors, and publisher or any other party involved with the publication of this article do not warrant the information in this article is accurate or complete, nor are they responsible for omissions or errors in the article or for the results of using this information. They are also not responsible for any of the statements made by individuals posting their own stories or experiences on this site.

Marianne has three sons. Her youngest, Owen is two and has DC. She would like to talk to other families in her position. Click here to read about her and her familiy.

Dorothy De Guia just lost her 18 year-old daughter to DC this past September. She lives in Australia and while still grieving, she would love to make contact with other families and share her experiences. Click here to read a little more about her.

Randy Pentland was born in 1963 and has a relatively mild form of DC. Many of us had the pleasure of meeting him at Camp Sunshine in the fall of 2010. He lives in Canada and would love to talk to other families with DC. His phone numbers are 506-855-3961 and 506-874-8578.

Josh is 16 years old and was diagnosed 10 years ago. He is very brave and has had many ups and downs in his short life. His father, Bruce, has never connected with anyone else who has DC and would love to talk to other parents facing the same challenges they are. Click here to read more about Josh and his family.

Seth Galena and Hindy Poupko's 14 month old daughter, Ayelet was diagnosed with DC just two days ago--Feb. 3, 2011. Seth is anxious to contact other families dealing with this disease. You can write to him at sgalena@vml.com.

Sept 16, 2011 update: Ayelet is currently at Cincinatti Children's Hospital. She had a bone marrow transplant on 8/30/2011. You can follow her progress at http://ayeletgalena.tumblr.com/. Or click here to go directly to their blog.

Victoria Yousefi escaped from Iran when the Shah was over thrown. She came to the United States with her three young children. Soon after making America her home, her nine-year-old, Omid, was diagnosed with DC. Read about Victoria and Omid here.

Melinda Ford has been taking care of her 10-year old granddaughter, McKenzie. McKenzie underwent transplant in Jan, 2011. Read about her story from McKenzie's perspective here.

Theresa Mitro's son was diagnosed with severe aplastic anemia. While she does not mention whether he was ever diagnosed with DC, many DC patients often go undiagnosed and are only diagnosed as aplastic anemia. She asked to have her story posted here.

This forum is to allow people and families affected by DC to share their stories with the DC community. It is not intended as a vehicle for promoting other charities or personal causes. Therefore we ask that your submissions not include solicitations for donations or promotions of any kind.

We reserve the right to edit content deemed inappropriate in this regard.

Rebecca Seiler's son Evan is almost 4 and has DC. Rebecca would like to connect with other families facing the same hurdles and problems she is. Please get in touch with her at spruggit@aol.com.

Hannah Corn turned 8 on Aug. 27, 2011. 3 days later she was diagnosed with DC. Her mother, Gail writes about their story and would like to connect with other families. Click here to read their story.

Peter Futia was born in India and abandoned at birth. His mother Christine adopted him at six months. He is now 17 and has stuggled all his life with many health issues but just a few days ago on Nov. 4, 2011 it was confirmed that he has DC. Please read their story here.

Lori's son Keenan just turned 3. He has DC and the HH variant. She would like to talk to other families in similar situations. Read their story here.

Carmen Gonzalez writes about her son Damian who was diagnosed July, 2011. You can click here to read her story.