We still Hope
Started this discussion. Last reply by Sickle Cell Warrior Aug 27, 2009. 7 Replies 0 Likes
Posted on July 9, 2013 at 6:20pm 2 Comments 1 Like
Hi Everyone,
So sorry beeing away for so long. In fact it has been quite a while since I came here. Shamefull....
Yes, the reality of dealing with sickle cell just came to me as hard as it could. My son, who was crisis free until the age of 4, had a acute stroke 3 weeks after his 4th birthday. It was devastating and to make things even more painful, 6 months later he had the second one. We are worrking to have him a bone marrow transplant as quickly as we possivble can now,…
ContinuePosted on May 17, 2011 at 12:31pm 2 Comments 1 Like
Hello everybody,
Sorry I have being so away. Actually I think since I got pregnant with my second child I didn't had much time to sit and share some about us. My son is already 2 years and 9 months old, and as good as it can look, we can say we had have never any problems with him. He only had swelling on his foot and hand once, when he started teething, and despite his hgb level being always lower than 6g/dl he is a hyperactive little one. Yeah, we had a little girl back on Feb.…
ContinuePosted on August 9, 2009 at 4:55pm 1 Comment 1 Like
Posted on May 3, 2009 at 3:23pm 2 Comments 0 Likes
Posted on April 28, 2009 at 2:07pm 7 Comments 0 Likes
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happy birthday Nina, wish you and your son a blessed year!
wow, what an amazing little fella, i wish him continued great health and success, hes well on his way to greatness!
No, He never had anything. He has sickle cell with HPFH. I have a friend in Brazil that the doctor didn't give them an answer until now and can you believe the baby is almost one year old. He is not even on Penicillin. I'll definitely call you.
Take Care
When I was pregnant, I did the blood tests that the doctor asked for, and I found out I had the trait. By then, I didn't even know what was sickle cell disease. Then, I freaked out, because and you read about it, there is so many painful things that may happen. Right after we finding out my husband was tested, and he doesn't have neither the disease nor the trait. So, we were relieved. So, when they called us, I was so upset. I told them, there was no way he could have sickle cell. But, they assured to me that he had it. They explained that sometimes the person has a different kind, like talassemia and. So, we went to he first appointment at Children's Hospital. I asked them what kind he had, but they said it was too early to find out. Just when he turned 1 year old. There is no way I was going to wait that long. I told them to test my husband. Because, if I have the AS, my husband would be he decisive case. They agreed and my husband did test, which it took forever for the doctor to call me back with the results. I as the one calling and bothering. When we saw them again, she said she had at her table but there was no reason to call, because she was going to see us in person anyway ( after 2 months). I don't think they understand what we go through. The agony and everything else. To them it is like nothing. It really makes me mad.
Does the carao work? How are giving him folic acid? breaking on the food?