Family Stories

Our Family Stories are being updated. If you have a story or experience you would like to share with others, or if you have an update for your story, please click here.


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.

Anna's son, Cole has two extremely rare diseases--DC and EB.  Anna has been fighting for answers his entire life.  She would like to meet other parents dealing with some of the same problems as they are.  Read their story by clicking here.

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 Dana writes about her struggles here.

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.  Click here to read their story

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

Daniel  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 including an internet story update by clicking here.

Deirdre lives in Ireland and is no stranger to the tragedies of DC. Several of her family members have been affected by this disease. She would love to talk to other families about their experiences. Click here to read more.

Dorothy  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.

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


Gina's  husband has DC and would like to connect with other families.  Her husband is on Danazol.  "My husband is 51 years old and has just been diagnosed with DC. In his 30's he had cataract surgery in both eyes. At that same time frame he had some signs of low platelet issues. Back then the hematologist did a bone marrow test and did not find any disease. They sent him home and said that was just the way his blood was and had no follow ups until recent blood test showed platelets in the 40's, then 30's and last test was at 27. They want to put him on Danazol and have put him in the marrow registry. They also want my 26 year old son in to test to see if he has DC. It seems that most people diagnosed and have symptoms early in childhood. Has anyone had experience with diagnosis later in life? And has Danazol helped prevent bone marrow transplantation? I also read that people with DC have hard time with chemo and in order to have bone marrow transplant he was told he had to have chemo also? Is that always the case? Received this diagnosis two days ago and I am glad I found this site. Any info anyone can give me would be greatly appreciated as I am now very scared for my husband and son. " 

Hannah  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.

Click here to read Heidi's story about her son Anthony who was diagnosed with DC when he was just 3 years old.

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. Read her full story 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.  To learn more, click here.

Jenny and Brad'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.  To read about Jenny and her family, click here.

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.

Julie was one of the first board members of DC Outreach. She and her husband Bryan have a son, Josh with DC. Josh recently underwent a successful BMT. Read their story here.

Originally diagnosed with Aplastic Anemia, Kelly now has a DC diagnosis.  She would like to talk to other patients with DC.  Click here to read more about Kelly.

Kjell's stepson, Rafael needs transfusions twice a week.  He will be starting hormones soon.  Kjell is anxious to talk about DC with anyone who can give him some advice or who can share their experiences with him.  Read his story here.

Laura's son Jorge was diagnosed with DC/HH in January of 2010 when he was just three years old.  They live in northern Spain and are anxious to connect with other DC families.  Click here to read their story.

In August 2006, the life of Lily Jean, 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.  Click here to read her full story.

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 and update here.

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 family.

Melinda  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.

Michelle's 10 month-old was just diagnosed with DC.  They live in Australia and would love to contact any other families facing the same problems.  Read more about her story here.

Monica's daughter Beatrice has spent a huge chunk of her young life in the hospital and has gone through two bone marrow transplants. They would love to connect with other DC patients and families. Please read a little about their story here.

Nick's two sons and his wife have DC X-linked due to the mutation in the DKC1 gene. They are in Canada and would like to gain as much information as they can from people who can help. Read their story by clicking here.

Pam and Paul are from New Zealand. They lost their 18 year-old son Aaron a year ago to DC and then found out that their now 23-year old son Tony also has it. Recently NZ television ran a story on them. Click on this link to watch their story.

Peter  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.

Rachel and Nick have two children. Their oldest, Ronan, is now seven and had a successful bone marrow transplant in June of 2011. Please click here to see a video of their amazing journey leading up to BMT.  

Randy  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.

Rebecca'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. 

When she sets her mind to something, Robin, a DC survivor for 30+ years, won’t let anything stand in her way -- including undergoing a bone marrow transplant and having a child. Read more.

Roseanna's daughter, Maggie was small from the time she was born.  They noticed differences between her and her siblings when she was just three years old.  Now, at 11, doctors believe she may have DC.  Please click here to read their story.

Sanne and Joergen are from Denmark. They have three children. The youngest has DC and had a transplant in December of 2010. Mathias has had many problems since then. Sanne and Joergen would like to connect with other families who have children with DC. Please read more of their story here.  They have also posted an update as of Summer 2013.

Seth and Hindy'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.  Click here for updates.

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 by clicking here.

Susan is a nurse and her son was diagnosed in Sept. of 2012.  Although she is very familiar with all aspects of medicine she would love to contact other families going through some of the same problems she is.  To read her story and learn more about her son, Matthew, click here.

Sandra's grandson was diagnosed with liver fibrosis at 3.  They now have a DC diagnosis.  Sandra would love to talk to any other families who are dealing with the same issues she is.  She feels helpless.  To read more and to contact her, click here.

Tamara  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.

Tara is living every parent's nightmare.  Read her brief but compelling story here.

Theresa'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.

Victoria  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.


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.