A positive example of the effects of research on children and/or families:
The story that I am going to share with you today hits home because it is about my youngest daughter Gracie. Gracie is 7 years old and in the second grade. Two years ago, Gracie needed surgery. Her surgeon ordered us to take Gracie for labs, but her labs came back negative. They did not know why at the time so they asked us to take her back to the lab for more blood work. Still not knowing what was going on with Gracie, she became part of a research study that required her to get blood work two to three times a week. I was heart broken, but I knew that it was necessary and we also wanted and needed to find answers. After almost 6 months, they were able to diagnose Gracie with having Factor VII deficiency. Through their findings, they were able to give her the vitamin k and other medication that she needed in order not to bleed out during her surgery. She took those meds weeks prior to her surgery and that helped save her life. Factor VII deficiency has no cure, but knowing what it is, we are able to take the necessary precautions when she gets hurt, cut, or has nosebleeds, which is something that she suffers from due to her condition. We are still going through the process and I got tested 1 year ago and my labs came back fine, but will get tested again to see what genes causes this condition because it is said that both parents need to have it because it is a rare hereditary blood disorder and since I don't have it, they want to compare our genes and see which genes are affecting her since it is believed that she got it by hereditary and did not acquired it during birth. Gracie will be part of this research for the rest of her life since they want to see and learn how her body will react as she gets older, when she gets her menstrual cycles, and when she gives birth if she decides to. Her future husband will also need to get tested so they can learn about the risks if they do decide to have a family.
This is one of the many reasons that I believe that research, even though sometimes it is tough on people, especially on children, it is necessary and it does have societal benefits. Hopefully the doctors that have seen my daughter are able to diagnose other children and adults earlier on and can help save their lives and continue researching for answers and bring awareness to this rare hereditary blood disorder. There are only fewer that 200 documented cases. I have provided a link if you would like to learn more about factor VII deficiency.
Factor VII Deficiency: Causes, Symptoms & Diagnosis - Healthline
www.healthline.com/health/factor-vii-deficiency
Hi Reyna
ReplyDeleteKnowing what it is? The critical answer to the unknown. That is truly what transpired in your story. I am grateful that you did not the unknown frighten you from receiving what was necessary.Do you agree that research is necessary? Do you think societal benefits are necessary risk? Would it be fair to say that research is necessary to overcome the unknown? From your experience has researching the unknown been useful and would you consent to it again? I appreciate you sharing your personal experience with the class its great food for thought in decision making for caregivers. Great post.
Martine
Reyna,
ReplyDeleteGreat post. I agree with you on the same level. My husband lost his son to sickle cell anemia over thirty years ago in a previous marriage. He had two children that in the marriage before he discovered that he and his wife both had the trait. His was nine years old when he died. He was also a part of research. This research has made life better for his daughter who also has the disorder. His daughter is twenty-five and a survivor. It's sad he lost his son before the all the research was done.
Camela
Hi Camela,
DeleteThank you for sharing about your family. I am sorry to hear about your husband's loss. I can't even imagine what he went through. It is nice to hear that his daughter is living a healthy life. It is through research that they have found cures. In my daughter's case, I am glad that we went though what we did because now we know and we have a plan in place. The school has a plan, her after school program has a plan, and she also has a medical bracelet on her 24/7. My daughter suffers from nose bleeds and for someone without that disorder, it would be looked at as not an emergency, but for her, it is. She cannot bleed no more than 10 minutes without needed medication to stop the bleeding. Things that are considered "normal" for other children, such as nosebleeds, teeth falling out, bruises, are not for her. We have to monitor how much she's bleeding and for how long and also her bruises because it could be life threatning. Without research, we would not know what we know.
Reyna
Hi Reyna. I am sorry that your child have to go through the pain. I know that it is Hard for you as well. I believe that you are a strong woman and that is wonderful. They wanted my son to participate in a study but I didn't get the saliva back in on time. He has Autism and they are trying to see how and why he has Autism. I have gotten tested but I'm not sure about my husband. But I think that research is great to help save lives.
ReplyDeleteThank you Evelyn.
DeleteIt is a hard thing to go through, but I believe that we can contribute and help save lives and that makes it all worth it. I went through testing almost 2 years ago (for all types of blood disorders), but they want me to go again and it is tough. I don't like getting poked with needles and they take about 12 biles of blood, but I will do anything for my daughter and I know that I am also helping others. My husband did not want to go through the testing. He is in denial and I understand so I don't even push the subject. It is hard to know that something is wrong with your child so I get it and that's his way of coping. At the end of the day we want what's best for our children and for every child so we do what we have to do.
Reyna
Wow, Reyna
ReplyDeleteAnother amazing story, thanks for sharing. I really do believe that research is necessary and produces positive results that has help save the live's of many people all over especially children.
Bea
Reyna, Thank you for sharing yet another compelling story that is full of encouragement. I agree that participation will help others along the way. I understand as a mother, we want answers. If not for our own children, then for the future.
ReplyDeleteI hope and pray for positive findings. Do you ever receive negative feedback from family members for your participation?
Reyna, thank you for sharing this story. I am all for research as long as it is done ethically and for the right reasons. Hearing this story makes me realize how hard research can be on children, but getting the answers can outweigh those hard times. Have you ever received negative feedback from your daughter? or her father? Does your daughter understand and assent to the research?
ReplyDeleteHi Amanda,
DeleteMy daughter even though she's only 7 years old, is very mature and understands that everything is done for her health. She is a trooper and a very strong person. Her reaction and courage is what helps me. My husband is also very supportive. I became very overwhelmed at times when I had to take her 3 times a week (labs), so he would take off from work and take her. Even though he's kind of in denial, he is very much involved. He takes her to her appointments as well.
Reyna