Our story..need all the help we can get

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ymikhale

New member
Sorry to hear about diagnosis, it is really a very difficult time for every parent. I know it is hard to believe now, but it will get better.
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<br />I agree with everything others said regarding treatments, just wanted to pitch in on CF centers. My family lives in Israel and last summer while visiting I took my dd for a second opinion to Hadassah Medical center in Jerusalem. If it is feasible for you, i strongly recommend it. We saw Prof Eitan Kerem, he is world renowned expert in CF and head of the center, he is also very easy to reach by email, i still contact him regularly when i have questions and he responds promptly.
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<br />Hope it helps
 
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MyBabyCeline

Member
Thank you all so much for your kind words and good advice. My husband and I are actually considering the idea of going somewhere where good CF care is available. My brother currently works and lives in Newcastle, UK so that was our first option, since we could stay with him at his appartment and that would really cut back on the expenses. We are already in contact with a doctor there (not really sure what her specialty is but she's a friend of a friend and I know that she has many CF cases). Another option was the US since my husband's best friend lives there (in Houston, Texas) and there would also be somewhere for us to stay, but the problem is that US visas are really hard to get so I'm not sure if that's an option after all.
I was also told by a friend that Israel is one good option since it's near and offers good CF care but I'm also not sure how easy it is to get a visa. So it seems that we really should go through all our options and decide what's best for us and our daughter.
I will keep you informed on any updates. Thanks again
 
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MyBabyCeline

Member
Thank you all so much for your kind words and good advice. My husband and I are actually considering the idea of going somewhere where good CF care is available. My brother currently works and lives in Newcastle, UK so that was our first option, since we could stay with him at his appartment and that would really cut back on the expenses. We are already in contact with a doctor there (not really sure what her specialty is but she's a friend of a friend and I know that she has many CF cases). Another option was the US since my husband's best friend lives there (in Houston, Texas) and there would also be somewhere for us to stay, but the problem is that US visas are really hard to get so I'm not sure if that's an option after all.
I was also told by a friend that Israel is one good option since it's near and offers good CF care but I'm also not sure how easy it is to get a visa. So it seems that we really should go through all our options and decide what's best for us and our daughter.
I will keep you informed on any updates. Thanks again
 
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MyBabyCeline

Member
Thank you all so much for your kind words and good advice. My husband and I are actually considering the idea of going somewhere where good CF care is available. My brother currently works and lives in Newcastle, UK so that was our first option, since we could stay with him at his appartment and that would really cut back on the expenses. We are already in contact with a doctor there (not really sure what her specialty is but she's a friend of a friend and I know that she has many CF cases). Another option was the US since my husband's best friend lives there (in Houston, Texas) and there would also be somewhere for us to stay, but the problem is that US visas are really hard to get so I'm not sure if that's an option after all.
<br />I was also told by a friend that Israel is one good option since it's near and offers good CF care but I'm also not sure how easy it is to get a visa. So it seems that we really should go through all our options and decide what's best for us and our daughter.
<br />I will keep you informed on any updates. Thanks again
 
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Tammy15

New member
Hi Hana,
congrats first of all on your daughter. Unfortunatley my son was diagnosed at 4 days old surgery at 3 am for a blocked bowel . I had nevr heard of CF before so that was my introduction to it . The doctor told us at that time don't read a lot of material out there as it was all doom and gloom, of course well meaning family members did. Our first visit to CF center another mother was really helpful she never treated her kids as sickly and her son was trying to get CF doctor to tell her he could not go back to school. That helped me even the many steps backwards we just incorportaed into our daily routines. We had two more children, one who is a carrier and one who had CF. My son skis plays tennis, snowboards and is 29, play basss guitar in a band that you can't under stand lyrics. My daughter with CF had a child she was more of a shopper,she did play basketball but for the most part always convinced the gym teacher she was too ill to participate. I hope you are able to get to a CF center not only did I learn something from another mom there I also got the confidence to know how to care and understand the signs when my children were sick. Sorry this is so long a reply. Best wishes for a happy future . Tammy
 
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Tammy15

New member
Hi Hana,
congrats first of all on your daughter. Unfortunatley my son was diagnosed at 4 days old surgery at 3 am for a blocked bowel . I had nevr heard of CF before so that was my introduction to it . The doctor told us at that time don't read a lot of material out there as it was all doom and gloom, of course well meaning family members did. Our first visit to CF center another mother was really helpful she never treated her kids as sickly and her son was trying to get CF doctor to tell her he could not go back to school. That helped me even the many steps backwards we just incorportaed into our daily routines. We had two more children, one who is a carrier and one who had CF. My son skis plays tennis, snowboards and is 29, play basss guitar in a band that you can't under stand lyrics. My daughter with CF had a child she was more of a shopper,she did play basketball but for the most part always convinced the gym teacher she was too ill to participate. I hope you are able to get to a CF center not only did I learn something from another mom there I also got the confidence to know how to care and understand the signs when my children were sick. Sorry this is so long a reply. Best wishes for a happy future . Tammy
 
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Tammy15

New member
Hi Hana,
<br />congrats first of all on your daughter. Unfortunatley my son was diagnosed at 4 days old surgery at 3 am for a blocked bowel . I had nevr heard of CF before so that was my introduction to it . The doctor told us at that time don't read a lot of material out there as it was all doom and gloom, of course well meaning family members did. Our first visit to CF center another mother was really helpful she never treated her kids as sickly and her son was trying to get CF doctor to tell her he could not go back to school. That helped me even the many steps backwards we just incorportaed into our daily routines. We had two more children, one who is a carrier and one who had CF. My son skis plays tennis, snowboards and is 29, play basss guitar in a band that you can't under stand lyrics. My daughter with CF had a child she was more of a shopper,she did play basketball but for the most part always convinced the gym teacher she was too ill to participate. I hope you are able to get to a CF center not only did I learn something from another mom there I also got the confidence to know how to care and understand the signs when my children were sick. Sorry this is so long a reply. Best wishes for a happy future . Tammy
 
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MyBabyCeline

Member
Thank you Tammy. It's always great and reassuring to hear what other families are doing to deal wiht this horrible disease. And I really become hopeful when I see that so many kids with CF have managed to grow up into healthy adults.
I hope you and your family always stay well and healthy.
 
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MyBabyCeline

Member
Thank you Tammy. It's always great and reassuring to hear what other families are doing to deal wiht this horrible disease. And I really become hopeful when I see that so many kids with CF have managed to grow up into healthy adults.
I hope you and your family always stay well and healthy.
 
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MyBabyCeline

Member
Thank you Tammy. It's always great and reassuring to hear what other families are doing to deal wiht this horrible disease. And I really become hopeful when I see that so many kids with CF have managed to grow up into healthy adults.
<br />I hope you and your family always stay well and healthy.
 
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Imogene

Administrator
Hana, I have spoken with the Zain Group Medical Consultant from Amman.

Check your personal messages more information.

Congratulations on your new little one!
 
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Imogene

Administrator
Hana, I have spoken with the Zain Group Medical Consultant from Amman.

Check your personal messages more information.

Congratulations on your new little one!
 
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Imogene

Administrator
Hana, I have spoken with the Zain Group Medical Consultant from Amman.
<br />
<br />Check your personal messages more information.
<br />
<br />Congratulations on your new little one!
 
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AleksandraKaczynska

New member
I heard good things about centers in Uk. Also the climate there is better - since it's moist and worm. I don't know about Israel but that some people from Poland go there for holidays to the Dead Sea area and they had help from local cf center.
 
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AleksandraKaczynska

New member
I heard good things about centers in Uk. Also the climate there is better - since it's moist and worm. I don't know about Israel but that some people from Poland go there for holidays to the Dead Sea area and they had help from local cf center.
 
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AleksandraKaczynska

New member
I heard good things about centers in Uk. Also the climate there is better - since it's moist and worm. I don't know about Israel but that some people from Poland go there for holidays to the Dead Sea area and they had help from local cf center.
 
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mamaScarlett

Active member
Hi Hana,
Congratulations on the birth of your baby girl. I'm sorry you are going through this, but you sound like a wonderful mother who is doing everything you can in the best way for your daughter.
If you plan on continuing to live in Jordan, then I think the best thing to do would be to take a trip to meet with a Cf specialist somewhere else, and then have that Cf doctor build a relationship with a local pulmonologist in Jordan so they could talk or email back and forth as needed to get you the best care possible.
I would follow the lead Imogene sent you about the Zain group in Amman, and start researching Israel who would definitely have Cf docs, and possibly Istanbul. I know both of them would be very far for you to go but possibly easier than the US or UK. If financially you can swing the US or UK then there's no problem with finding someone there. I'd really try to find a Jordanian doc or pediatric specialist of some kind that is willing to work with you and a Cf specialist in another country or overseas.
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And here is the email address of the Cystic Fibrosis Foundation. I'd try emailing them your situation and seeing if they have any suggestions of doctors in your region.
info@cff.org
Important: Please include your full mailing address, phone number, and fax number in all electronic correspondence.
 
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