My daughter Audrey

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Offline Scott

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My daughter Audrey
« on: January 19, 2010, 04:09:01 PM »
Hello everyone. My name is Scott and I have a 15 month old daughter named Audrey. Audrey does not have Thalassemia, but she was diagnosed with Diamond Blackfan Anemia and requires a transfusion every 4-5 weeks. I was told about this web site and the wealth of information it provides. I am especially interested in the chelation topics because if Audrey has to continue with transfusion therapy, she will have to start chelating at some point. We are going to try a prednisone trial within a couple months. Prednisone makes roughly 50% of Diamond Blackfan patients start making red blood cells, so we are hopeful this will work.

I have read a lot of posts here and I can say that you have offered me something very precious: Hope. I have been worried sick about my daughter since her diagnosis, but through sites like this one I see that she can have a normal life and I will do everything in my power to help provide just that.

Thank you for listening and for this forum,

Scott Nethery

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Offline Zaini

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Re: My daughter Audrey
« Reply #1 on: January 19, 2010, 05:32:10 PM »
Hello Scott,

:welcomewagon on the forum,i am sorry i don't know much about Diamond Blackfan anemia,but i am sure with proper treatment your daughter will live a normal and healthy life,wishing her best of luck :goodluck .

Zaini.
^*^Xaini^*^

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Offline Dori

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Re: My daughter Audrey
« Reply #2 on: February 03, 2010, 12:53:43 PM »
Hello Scott,

I am at Uni so I must keep it start. I do know quiet(te?) a few DBA patients and I would like to bring you in contact with each other. As for one of them I know for sure that prednisone did it's job. You are aware of DBA organisation? Your daughter's name reminds me of my friend who's father is from Australia. Where do you live?
For more information; please send me a live message. Due the fact of having no pc for my own I can not bring regular visits to this forum anymore. Thank you for understanding.
What else did I want to say? Owh, by DBA they also use modificate (sp/word?) horse and rabbit gene right? I should know what it is.

 :welcome

Now I must return to my 2 papers - which I should have hand over yesterday.... - so I will wait for your answer.
Happy Day!

Dori

Re: My daughter Audrey
« Reply #3 on: May 06, 2010, 12:03:12 AM »
Aubrey is so blessed you are becoming a care expert for her.  This site gives people the ability to understand.  I do not know anything about the issue your daughter has, but, since you speak of how difficult this is, I want to encourage you.  When I was diagnosed a fairly grim picture was painted for my future.  In the 35 years since, I have found doctors to be wrong, much more than they are right.  Please keep confident that in educating yourself like this you can make a HUGE difference in your daughters life.  And, make sure she always knows she can do whatever she wants.  Best wishes to both of you, OldThalGal

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Offline Dori

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Re: My daughter Audrey
« Reply #4 on: May 07, 2010, 07:43:08 AM »
Hehe, I finally was able to find this post again. My offer is still open: If you want I can bring you in contact with my DBA friends.
I have a rare blood disease myself and have been able to start a lil' network with people who have other rare blood disease like DBA, CDA, AA, PNH, SCD and hyperhemoglobine. We are from all around the world.

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Offline Scott

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Re: My daughter Audrey
« Reply #5 on: May 12, 2010, 12:04:43 PM »
Thank you all so much for your words of encouragement! It has definitely been difficult to deal with, but Audrey is doing great and is already a wonderful and beautiful person. She will be starting her prednisone trial in around 4 weeks. We are hopeful she will respond to the steroid, but if she doesn't, we will continue with what we have been doing since Audrey's birth (and also chelation).

Dori, I am so sorry I have not gotten back to you. I check this site fairly frequently and for some reason I never saw your first post. We live in Louisville Kentucky. I am a member of the DBA Yahoo group which includes parents of individuals with DBA as well as individuals with DBA. I am also a member of the UK DBA web site and have met people from all over the world who are affected by DBA. I also stay in contact with the DBA Foundation here in the states. However, with all that said I would love to contact your friends who are affected or have DBA. As far as the horse and rabbit gene, I am not sure what that is. Do you know anymore about that treatment? Thank you so much for your offer to help me network with more people! I will send you an e-mail (live message) once I am home (I am at work right now!!).

OldThalGal... thank you so much for your words of encouragement. I will make sure that Audrey knows she can do whatever she wants in life! I really do appreciate the care and wisdom of your post. I wish you all the best.

Take care everyone!

Scott
« Last Edit: May 12, 2010, 12:10:59 PM by Scott »

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Offline Dori

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Re: My daughter Audrey
« Reply #6 on: June 01, 2010, 11:45:52 AM »
I remember you send me a message. It is very busy here, but summer is almost there. You can expect an email from me at the third week of June. I am sorry for the wait, but lots of stuff to do. Not only my emailboxes are a mess, also my room and my head. I will contact my dba friends so soon as possible. I know a girl Lola who does a steriod therapy and is busy to get her amount down. You can find her at carepages.com Her mother is very sweet, so she help you although she is busy too. (she restarted a study)

Dore

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Offline Manal

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Re: My daughter Audrey
« Reply #7 on: June 02, 2010, 12:55:26 AM »
Good luck Scott with the steriods :wink

manal

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Offline Scott

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Re: My daughter Audrey
« Reply #8 on: June 02, 2010, 11:49:06 AM »
Thank you Dori!! I am very familiar with Lola! I have never met her mom in person, but she is also a member of the DBA US yahoo group. I have communicated with her several times!

Good Luck with end of the year exams and such!!

Scott


I remember you send me a message. It is very busy here, but summer is almost there. You can expect an email from me at the third week of June. I am sorry for the wait, but lots of stuff to do. Not only my emailboxes are a mess, also my room and my head. I will contact my dba friends so soon as possible. I know a girl Lola who does a steriod therapy and is busy to get her amount down. You can find her at carepages.com Her mother is very sweet, so she help you although she is busy too. (she restarted a study)

Dore

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Offline Scott

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Re: My daughter Audrey
« Reply #9 on: June 02, 2010, 11:50:52 AM »
Thank you Manal! I will post here once we know if Audrey responds or not!

Scott

Good luck Scott with the steriods :wink

manal

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Offline Dori

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Re: My daughter Audrey
« Reply #10 on: June 03, 2010, 08:22:04 PM »
Thank you Dori!! I am very familiar with Lola! I have never met her mom in person, but she is also a member of the DBA US yahoo group. I have communicated with her several times!

Good Luck with end of the year exams and such!!

Scott


That's Nice to hear. I too know this family only from the Net. I have more connects with dba. I know a dutch woman with it. I might ask her to get in touch with you. Somewhere next week I will change my status on facebook into something that I search for DBA families. You know, I got lots of contacts and sometimes I do not know exactly which people have other blood diseases.

Thank you.

Best wishes to your daughter and the rest of family,
Dore

 

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