DKC-Dristin's Journey Remembered
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About this cause:
On July 10, 2017 Dristin passed away after 2 years of dealing with an incurable disease. He had become deathly sick with the flu, fungal pneumonia and two strands of colds that made him not breathe well. This was fatal for him due to his disease. He was 3 days shy of turning 16. He walked through all of the complications with his head held high and determination to live. He didn't want to die. His last coherent conversation with me, we talked about him going home the next day and he asked why the doctors were letting him leave when they said they were fixing him. I told him that they could do nothing more to fix him and that he was going to be home, comfortable in his own bed as he requested. He asked more questions about why they couldn't help him and what about the biopsy of his lungs. I looked at Dristin and told him that they new what was wrong with his lungs. He looked at me (his mom) and asked " so I am going to die" and with a lump in my throat I let him know he was going to die. Dristin looked at me and said "But I don't want to die" I told him "I know bud but your body can't keep up with your mind. You're headstrong and your body is tired" With tears in his eyes he said no and attempted to breath on his own without the oxygen and I was right there helping but the body just couldn't do it alone. He put on his oxygen and I told Dristin to get some rest because we are going home tomorrow. As Dristin slept I watched him through the night. The next day Dristin came home and got comfortable in his own bed. The whole family (blood and not blood) came over and we sat by his side. We sat with him and talked to him while we watched him slowly fall deeper into a sleep. His oxygen kept getting lower and the next morning at 4:07 on 7/10/17 he passed away. He didn't suffer, he wasn't in pain and peacefully passed in his sleep. We love you Dristin and will see you soon. Thank you for my big hug before you fell asleep for the last time. Thank you for allowing us to love you and picking us as your parents.
My son Dristin at the age of 14 was diagnosed with Dyskeratosis Congenita (DKC/DC). May 4, 2016 he had his bone marrow transplant. As a mother I have wanted to be by his side every moment that I could and at times I wasn't able to prior to his BMT. Bravery is one of the many characteristics that Dristin displays through this entire time and before he went to the hospital back in February of 2015 when we didn't know what was going on. Resilience and strength are other characteristics that he has demonstrated during the knews of this rare genetic disease that he 1:1million has. No cure has been found and the cause, well studies know it's a mutation of a gene and are working on finding more information. DKC is so rare it's hard to find if you have it or not. Peole could have DKC and have no symptoms, minor symptoms or severe symptoms. Many many complications occur from DKC and the bone marrow transplant was just to help his failing bone marrow which was not making platelets and if platelets where made they malfunctioned. So back to now, the present, because that's all we have. Sitting with Dristin I see discouraged family here at City of Hope. Dristin has been so optimistic through this whole thing and is a champ. Financially it's a struggle. I am with Dristin, Rich is working and that's the way it is supposed to be. We have done proactive steps prior to transplant- sperm banking( Dristin wants kids) not to say that DKC hasn't already effected that, but positive outlook for Dristin and children. Staying brave and supporting the awareness of DKC. I looked for a ribbon to show support and there is none- it's that rare. I will at this time be getting a rare genetic disorder ribbon tattoo which is the jeans ribbon. So if any of you want to support awareness that way it's the blue jeans ribbon. DKC is very rare and limited info is available. Read up on it at Dyskeratosis Congenita Outreach. Anything helps. My boy is still able to eat but hates hospital food-it's a pretty penny to feed my special boy but I will let him eat until we are homeless if that means he recovers and gets healthier. DKC HAS NO CURE!!!!! See updates for Dristins journey that we walked with him.

On July 10, 2017 Dristin passed away after 2 years of dealing with an incurable disease. He had become deathly sick with the flu, fungal pneumonia and two strands of colds that made him not breathe well. This was fatal for him due to his disease. He was 3 days shy of turning 16. He walked through all of the complications with his head held high and determination to live. He didn't want to die. His last coherent conversation with me, we talked about him going home the next day and he asked why the doctors were letting him leave when they said they were fixing him. I told him that they could do nothing more to fix him and that he was going to be home, comfortable in his own bed as he requested. He asked more questions about why they couldn't help him and what about the biopsy of his lungs. I looked at Dristin and told him that they new what was wrong with his lungs. He looked at me (his mom) and asked " so I am going to die" and with a lump in my throat I let him know he was going to die. Dristin looked at me and said "But I don't want to die" I told him "I know bud but your body can't keep up with your mind. You're headstrong and your body is tired" With tears in his eyes he said no and attempted to breath on his own without the oxygen and I was right there helping but the body just couldn't do it alone. He put on his oxygen and I told Dristin to get some rest because we are going home tomorrow. As Dristin slept I watched him through the night. The next day Dristin came home and got comfortable in his own bed. The whole family (blood and not blood) came over and we sat by his side. We sat with him and talked to him while we watched him slowly fall deeper into a sleep. His oxygen kept getting lower and the next morning at 4:07 on 7/10/17 he passed away. He didn't suffer, he wasn't in pain and peacefully passed in his sleep. We love you Dristin and will see you soon. Thank you for my big hug before you fell asleep for the last time. Thank you for allowing us to love you and picking us as your parents.
My son Dristin at the age of 14 was diagnosed with Dyskeratosis Congenita (DKC/DC). May 4, 2016 he had his bone marrow transplant. As a mother I have wanted to be by his side every moment that I could and at times I wasn't able to prior to his BMT. Bravery is one of the many characteristics that Dristin displays through this entire time and before he went to the hospital back in February of 2015 when we didn't know what was going on. Resilience and strength are other characteristics that he has demonstrated during the knews of this rare genetic disease that he 1:1million has. No cure has been found and the cause, well studies know it's a mutation of a gene and are working on finding more information. DKC is so rare it's hard to find if you have it or not. Peole could have DKC and have no symptoms, minor symptoms or severe symptoms. Many many complications occur from DKC and the bone marrow transplant was just to help his failing bone marrow which was not making platelets and if platelets where made they malfunctioned. So back to now, the present, because that's all we have. Sitting with Dristin I see discouraged family here at City of Hope. Dristin has been so optimistic through this whole thing and is a champ. Financially it's a struggle. I am with Dristin, Rich is working and that's the way it is supposed to be. We have done proactive steps prior to transplant- sperm banking( Dristin wants kids) not to say that DKC hasn't already effected that, but positive outlook for Dristin and children. Staying brave and supporting the awareness of DKC. I looked for a ribbon to show support and there is none- it's that rare. I will at this time be getting a rare genetic disorder ribbon tattoo which is the jeans ribbon. So if any of you want to support awareness that way it's the blue jeans ribbon. DKC is very rare and limited info is available. Read up on it at Dyskeratosis Congenita Outreach. Anything helps. My boy is still able to eat but hates hospital food-it's a pretty penny to feed my special boy but I will let him eat until we are homeless if that means he recovers and gets healthier. DKC HAS NO CURE!!!!! See updates for Dristins journey that we walked with him.
Organizer
Destiny Williams
Organizer
Fullerton, CA
