After two years of feeling isolated and lost, we finally received the diagnosis. DCOutreach provided not only support but also access to the latest information about DC and about its treatment.
I feel hope because I know we are not alone and because I know DCOutreach is working hard to help fund the next phase of research to treat and cure DC.
When my son was mistakenly diagnosed with Dyskeratosis Congenita, we found DCO. Then-President, Robin Huiras, was exceptionally inviting to us and offered all kinds of information and support. From giving us names of the real expert doctors and researchers to contact, to inviting our family to a special camp week in Maine, the whole group made us feel like a family. One of the biggest things was the DCO Guidelines for treatment book. This helped immensely in our own education of medical "experts" along the way. The monthly teleconference with doctors was especially helpful to us and ended up helping us achieve a correct diagnosis for our son, who is doing fantastic, almost a year post-bone marrow transplant. These are all amazing people fighting horrific battles, living life as an outsider cannot imagine, and they all find the time to help each other and others. The current President, Katie Stevens, spends her time helping others while attending school full-time and lobbying the government, too! She and her family even found the time to send my son a wonderful care package when he was in transplant. This is a great group, doing wonderful things. We are thankful we got to be a part of it, even if it was in error. We wish all of the families in DCO all the best and hope research continues to move forward.
If it wasn't for DCO we would have never been able to go to Camp Sunshine where we were introduced to our son's transplant doctor. DCO has promoted research and education for Dyskeratosis Congenita that has been life saving for our family and many other families. Thank you DCO!
The special bond we have made with families through DC Outreach has been priceless! These families have been with us all along giving us encouragement as our son went through his bone marrow transplant 2 years ago. Through DC Outreach we found out about Camp Sunshine and that is where we met our son's transplant doctor that has been with us from that very first contact at camp and that has brought us so much hope! By not having to deal with this disease alone and having the support of all the other families we have gotten to know has made this journey a lot more bearable!
DCO is a loving resource that supports its patients and caregivers with knowledge and a community. There advocacy and support of research will make lives better fir those coping with this rare disease.
DC Outreach has provided access to medical resources and emotional support to families impacted by this extremely rare disease. This grass-roots organization has a tremendous impact on those struggling through a profoundly difficult & rare disease.
With DCO we got a new family. Everyone we met is in our hart. DCO helpt us trough the hardest time in our life! We gaint a life long friendship. Without DCO we were lost in our country because there is just not enough knowledge here. Thanks for beiing there for us.
Five years ago I spent countless hours researching D.C.. We had never heard of it and had no idea what the future held for our first born grandson. I first discovered Camp Sunshine and through them learned of D.C.O.. Because of both, my daughter and son-in-law were able to meet a doctor that saved our grandson's life. It also put them in touch with other parents/patients fighting this rare disease. The advocacy program is wonderful and vital as you can feel very alone in this fight.
My daughter is now President of D.C.O.. The work that she and the other members do is priceless. There needs to be more money earmarked for the research of orphan diseases and they work tirelessly to try to make sure that happens for D.C. and shortened telomere biology disorders.
My son Max was diagnosed with DKC at the age of 13 months old, he then sadly passed away aged 15 months after contracting PCP Pneumonia due to severely low immune system. He had such severe bone marrow failure the Drs said that it's normally seen in an older adult. He sadly had all of the traits of DKC in an aggressive form and fought as hard as he could be he always had a big smile on his face. I have been shown a great deal of support from this organisation, especially from Katie. I hope many other parents, children and family get the support they need and I'm sure this organisation will help many more ❤️ Thank you!
DCO is invaluable to this rare disease community! The dedicated volunteers have helped to provide crucial, life-saving information to patients and care givers. The organization has also connected a group of people from around the globe to share vital data, research, and emotional support. Friendships made within the DCO community online and especially at the biannual camp (provided/organized by DCO), have made a big difference in coping with the ups and downs of this rare disease, as well. DCO is the BEST!!
They helped connect me with doctors that saved my son's life. This organization is priceless.
I have been inspired by the outreach efforts Dyskeratosis Congenita Outreach achieves. They work to keep the community united, provide care packages to families going through transplant, and work tirelessly to continue the research efforts in the field.
I can say without a doubt, I still have my firstborn because of DCO! They helped me reach physicians that specialize in this disease. It created relationships that continue for my husband and I as caregivers, for my son as the patient, and for my other children as the siblings. No one feels alone or lost with DCO.
I felt so passionately about the mission I volunteered to help continue it, and can proudly say that both on the outside and inside, DCO is an amazing NPO, that is making a big difference.
DCO has been absolutely essential in saving my own child's life. The board members and medical team that make up this group are instrumental in making sure information and connections are made to better the patient and families lives. I cannot say enough good about DCO. They make the world a better place. After our first camp I was so inspired I had to be a part of it too.
After my daughter was diagnosed with DC this was the first place we were directed to. The information we have received through the website, on monthly family chats and by attending family retreat at Camp Sunshine has been invaluable. We would be lost without them.
When I read the Facebook posts of moms and dads seeking answers and advice, or when I read the amazing stories of children and young adults affected by DC, who meet such tremendous challenges every day, I am grateful for the dedication of the people involved in Dyskeratosis Congenita Outreach Inc. They are vigilant, always ready to connect parents to resources, to disseminate needed information as soon as it is available, to fundraise, to encourage and affirm, to go out of their way to reassure young people and their families that they are never alone.
How do you explain a bone marrow failure cancer-causing genetic disorder in what started out to be a casual conversation about a loved one? Where can you connect with the parents and family and friends of other "one in one million" loved ones who are seeking answers to the same questions? This website connects those affected by DC with those who seek to effect change. It has been an invaluable resource for my family.
DCO has done a tremendous amount of work to connect the individuals impacted by this rare disease and they have worked tirelessly to help educate the medical field.
The individuals and doctors who are a part of this nonprofit give tremendous amount of time and are deeply connected to the families and patients who suffer from Dyskeratosis Congenita. Those who run DCO ask for nothing and provide so much support and strong medical advice that is priceless to us who are affected.
Dyskeratosis Congentia Outreach has dedicated staff searching for a cure for this rare disease. This disease seems to have different effects depending upon the individual and the circumstance's.
I personally Know several that are a part of the outreach progam, Robin and Diane, please reach out to them with either a donation or your help in some other way. Diane and Robin pour there time and energy assisting with charitable events and alerting people like us and around the world about this rare disease and how to recognize it .
If it wasn't for them many may have been lost due to this rare disease.
Please reach out to the Dykeratosis Congentia Outreach with a donation to assist them with there efforts to tame this rare disease that cripples and cause death to young children and young adults in our neighbor hoods and around the world.
Thanks so much for your donation
Randy L Huiras
Dyskeratosis Congenita is a disease that not everyone is very educated on.
Until my brother in law and his 3 children were diagnosed with it, I myself did not know very much about this disease. Very often a person talks to someone who have been sick but the doctors are not able to find out what is wrong with them. It could very well be Dyskeratosis Congenita that they have but don't know it.
The volunteers at DCO have helped bridge so many connections in the world of rare, inherited bone marrow disorders. The doctors and resources it makes available to its members shed light on a very dark and daunting topic.
The outreach and support group helps connect families affected by rare, telomere biology disorders. The volunteers who run the group provide family support meetings, sponsor family retreats, and support physicians involved in research. DC Outreach, Inc.'s Facebook page allows families the opportunity to ask questions questions and find answers not readily available in conventional media.
Core tenants of the group are education and advocacy and it recently published the disease's seminal treatment resource to aid families and physicians in managing this complex condition.
DC Outreach has been instrumental in our lives from the day of diagnosis. Team members have taken time to reach out to me personally and connect me to not only other families but, specialists in the field. They've taught me about studies, camps, and conferences which have influenced us greatly. They are always quick to help and treat us like family. We feel incredibly blessed to know them and have their support on our journey.
A wonderful organization that is working hard to provide education and support on a disease that isn't well known by doctors. Their work is making a real impact on getting the word out and helping those who are diagnosed.