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  1. M

    DeltaF508 and p.Arg75ln mutation???

    DeltaF508 and p.Arg75Gln mutation is the mutation identified for my daughter Dakota who is 5yrs old. Does anyone else know this mutation? What are anyone's experience medically etc with this? I have posted for Ambry but no one has responded. Thank you! Jana
  2. M

    DF508 and ??

    My daughter's full gene squencing came back...but its confusing... A little history is that we had a son (Xander) pass away at 14 months due to CF complications (he had DF508 and a 5t 12tg variant) we assumed since my daughter has shown CF ish symptoms hers would be the same (same parents) but...
  3. M

    Anyone remember me?

    I am not sure if anyone remembers me but I was active before we lost my infant son Xander but I withdrew away after his death (grief..ugh) but I find myself needing support because my daughter has been dealing with CF issues and I find myself worried so worried I am totally freaked out over...
  4. M

    Columbus and Dr. Allen

    We decided on Columbus Ohio and Dr. Allen as Dakota's doctor for her treatment. I am still very nervous to losing another child to this damn disease (sorry for the language but its really how I feel)
  5. M

    Opinions on CF Centers in Ohio

    Ok CF family, Baby Xander went to Dayton Children's Hospital for his CF care prior to his death. Some of you know my distaste of his CF doctor from chats with me. Now Dakota diagnosis prompts us to decide to 1) return to Dayton for care (not under same doc because I won't have that) or 2) Try...
  6. M

    Hey gang...

    Hey CF Family, Where do I start? Let's see after the death of my son Xander almost 11 months ago my older two kiddos were tested and "thought" to be only carriers. However, since my daughter Dakota has increasingly began to show symptoms that mimicked her brother we had her test repeated. Turns...
  7. M

    Update on Us...

    Hello my CF family, Just an update...my older two children are carriers and as most of you know Xander died on Thanksgiving from complications of CF. I miss and love ya all.
  8. M

    Memorial Website for Baby Xander

    Hello CF family, I know I have been gone for awhile now (trying to deal with losing baby Xander) but I wanted a chance to share his memorial website with his (and mine) CF online family...<a target=_blank class=ftalternatingbarlinklarge...
  9. M

    Frustrated...how much more...why..etc!

    Families, We are recently diagnosed and I am already fed up with what my poor lil guy has to go through...the breathing treatments, enzymes and doc visits (2 hrs from home) and now they (his CF doc) wants to do a lung CT....he is only 5 months...sheesh..poor lil guy....just a frustrated momma...
  10. M

    First hospital stay since diagnosis

    Hey gang, My 4 mo old son is now entering the hospital after being diagnosed 2 months ago. We are unsure of what to expect but we need prayers if not for anything but our sanity. Unfortunately the CF center he goes to (the closest) is 2 hours away from us...means major hospital stay...hotel...
  11. M

    Test results (anyone tell me what they mean please)

    Well we received the official test results for my son Xander who is 9 weeks old. They told me over the phone that he does have CF and set our first clinic date for Dec. 1st. They did try and explain the results but I guess it would easier in person. They would send them to me for my records...
  12. M

    Test results (anyone tell me what they mean please)

    Well we received the official test results for my son Xander who is 9 weeks old. They told me over the phone that he does have CF and set our first clinic date for Dec. 1st. They did try and explain the results but I guess it would easier in person. They would send them to me for my records...
  13. M

    Test results (anyone tell me what they mean please)

    Well we received the official test results for my son Xander who is 9 weeks old. They told me over the phone that he does have CF and set our first clinic date for Dec. 1st. They did try and explain the results but I guess it would easier in person. They would send them to me for my records...
  14. M

    Test results (anyone tell me what they mean please)

    Well we received the official test results for my son Xander who is 9 weeks old. They told me over the phone that he does have CF and set our first clinic date for Dec. 1st. They did try and explain the results but I guess it would easier in person. They would send them to me for my records...
  15. M

    Test results (anyone tell me what they mean please)

    Well we received the official test results for my son Xander who is 9 weeks old. They told me over the phone that he does have CF and set our first clinic date for Dec. 1st. They did try and explain the results but I guess it would easier in person. They would send them to me for my records...
  16. M

    Newly Diagnosed (2 month old son)

    Hi everyone, Where to begin...my son Xander is 9 weeks old. His IRT level flagged at his newborn screen with a 151. We went for his sweat testing and he scored a 30 which is considered borderline so we proceeded to bloodwork which then showed Delta F508 in addition to a T5 variant. My husband...
  17. M

    Newly Diagnosed (2 month old son)

    Hi everyone, Where to begin...my son Xander is 9 weeks old. His IRT level flagged at his newborn screen with a 151. We went for his sweat testing and he scored a 30 which is considered borderline so we proceeded to bloodwork which then showed Delta F508 in addition to a T5 variant. My husband...
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