Good friends GD diagnosed with CF

[poochie]

A very close friend of my family whom we have know for over 15 years has recently had a charming little granddaughter who was diagnosed with CF. I have known this family since both our children grew up together, and now both teach at the dance studio. Both found out they were expecting within a couple of weeks together. They were both ecstatic to find out they were both having little girls, and made plans how their girls would be best of friends. They were scheduled to deliver within 2 weeks of each other. But, little Madison was born almost a month early and was shortly diagnosed with cystic fibrosis. She has already had one surgery and is schedule for a second.. It is our hope that in her life time a cure will be found.

So my DH, DD her DF and their DD have all signed up for our first CF walk. You really have to know us to know we usually do not do this sort of thing due to not being too active for long walks. But the love we felt for little Maddie is unending. We will be there with my GD in her stroller in support of Maddie and all the children who suffer from CF. I have sent our my email letters and hopefully get some response from family members. If you have any plans on donating to a worthy cause please go to the CF website and click to make a donation for these wonderful kids http://www.cff.org/Great_Strides/AnnHilbrecht Our team name is Walking for Maddie. Just when you make a donation you can identify yourself as a DIS member.

Thank you.

 

[kbkids]

I have a good friend who has a daughter with CF. Both of our kids were born at the same time too, and her daughter was diagnosed at around 6 months. Other than digestive issues - she's had no respiratory problems at all. She's been very lucky, and to look at the child, you wouldn't know she had this - other than she is extremely tiny for her age.

They are also participating in the walk - already raised over $1000 herself. It really is a great cause!! Please donate if you can.

 

[raammartin]

My cousin, in her early 30's, has CF. She's in the hospital quite a bit. They never expected her to live this long, but with medical progress she's still with us. Late last year we were all called to see her in the hospital because they thought she would not make it. She did and we are so grateful.

 

[Bashful2]

Every year, our local TV station has a big CF telethon. They're so close to a cure that each year they say they hope this is the last time the telethon will be needed. Thankfully, at least, the life expectancy of a person with CF has increased greatly due to all the medical advances. Hopefully, a cure is not far away.

 

[C.Ann]

My youngest DD was misdiagnosed with CF back in the early 70's - false positives were rather common then.. I thought I was going to die myself - such an awful diagnosis.. (Back then I think the life expectancy was around 5..) The first 2 years of her life she spent a good 90% or more of her time in the hospital.. Eventually they learned what her real problems were and I'm happy to say she's 33 now..

There have been SO many advances - some of these children are now living into their 30's - and hopefully they will soon find a cure..

Thoughts and prayers to the families involved..

 

[poochie]

My youngest DD was misdiagnosed with CF back in the early 70's - false positives were rather common then.. I thought I was going to die myself - such an awful diagnosis.. (Back then I think the life expectancy was around 5..) The first 2 years of her life she spent a good 90% or more of her time in the hospital.. Eventually they learned what her real problems were and I'm happy to say she's 33 now..

There have been SO many advances - some of these children are now living into their 30's - and hopefully they will soon find a cure..

Thoughts and prayers to the families involved..

Oh I am so sorry!!!!! You must have gone thru He****. I know what they are going through, fear, uncertaincy, grief, and even some guilt (why I am not sure why, they did nothing wrong). But they have alot of friends around and we offer all our support for them. And that baby is always so happy too!!!

 

[bubbleprincessmom]

I'm so sorry for your friend. Sadly I am all to familiar with CF, both my brother and my son lost their lives to this illness. Take heart though that treatments that were in the experimental phase during my sons life are now regular treatment and children are living longer lives. For those of you who don't know, CF is the number 1 genetic killer of children, if you can, please support a very worthy cause!!! Good luck to you and your team and thank you!!!!!

monica

 

[poochie]

I'm so sorry for your friend. Sadly I am all to familiar with CF, both my brother and my son lost their lives to this illness. Take heart though that treatments that were in the experimental phase during my sons life are now regular treatment and children are living longer lives. For those of you who don't know, CF is the number 1 genetic killer of children, if you can, please support a very worthy cause!!! Good luck to you and your team and thank you!!!!!

monica

I knew it was big, but not this big. Sorry for your losses.

 

[poochie]

 

[poochie]

Just bumping this!!!!

 

[Dan Murphy]

My prayers are with Maddie, Poochie.

 

[Pop Daddy]

praying

 

[poochie]

Thank you Dan and Pop Daddy!! I will pass on your prayers!!

 

[poochie]

Bumping!!!

 

[Chuck-PA]

Our son has CF. He will be turning 18 in April. When he was diagnosed, he was 7 months old. We were told he would only live to be 12. There is a woman today who has CF and she is 65.
EVen though this is a life threatening illness, this is an illness that the child can lead a relatively normal life. Go to school, play sports, etc..

Our son takes about 23 different medicines a day and does his Chest Physical Therapy. (hand clapping his chest or using a vibrating vest) We are strict about not missing any meds or treatments.

A big part of treatment with CF is diet and exercise. They are to eat high fat diets and have physical activity everyday. This helps clear those airways. CF children have problems with malabsorption (sp?) of calories too. Therefore they tend to be smaller in size and weight.
My son is 5 feet 5. His weight is 134 pounds. This is a great weight for him.
He just hit the 25% on the growth chart, while growing up he was 5% or below.

What your friend is going through, the grief, anger, guilt, blame is a normal response to hearing a diagnose that will change their way of a "normal" life.
We never stopped doing anything, we have created many happy memories with him. Many disney trips and beach trips, you just sometimes need a break from your daily routine. Granted we did his meds and treatments while away but it was great to be away from your house that looks like a hospital or pharmacy.
ONe thing I would suggest is make sure they go to a CF Specialist and that they like him/her. This doctor and his CF team will be an ever present person in their lives, from visits, phone calls, hospital stays.
These parents will become experts in pulmonary care and keeping healthy.
If you or the family have any questions, please ask away..

 

[poochie]

Our son has CF. He will be turning 18 in April. When he was diagnosed, he was 7 months old. We were told he would only live to be 12. There is a woman today who has CF and she is 65.
EVen though this is a life threatening illness, this is an illness that the child can lead a relatively normal life. Go to school, play sports, etc..

Our son takes about 23 different medicines a day and does his Chest Physical Therapy. (hand clapping his chest or using a vibrating vest) We are strict about not missing any meds or treatments.

A big part of treatment with CF is diet and exercise. They are to eat high fat diets and have physical activity everyday. This helps clear those airways. CF children have problems with malabsorption (sp?) of calories too. Therefore they tend to be smaller in size and weight.
My son is 5 feet 5. His weight is 134 pounds. This is a great weight for him.
He just hit the 25% on the growth chart, while growing up he was 5% or below.

What your friend is going through, the grief, anger, guilt, blame is a normal response to hearing a diagnose that will change their way of a "normal" life.
We never stopped doing anything, we have created many happy memories with him. Many disney trips and beach trips, you just sometimes need a break from your daily routine. Granted we did his meds and treatments while away but it was great to be away from your house that looks like a hospital or pharmacy.
ONe thing I would suggest is make sure they go to a CF Specialist and that they like him/her. This doctor and his CF team will be an ever present person in their lives, from visits, phone calls, hospital stays.
These parents will become experts in pulmonary care and keeping healthy.
If you or the family have any questions, please ask away..

Chuck, I passed on your information today, since they just got the news today that it is in her lungs too. It was definately a down day for them. I did tell them how your DS is 18 and doing well past what they predicted. You are doing a wonderful job with him and gave a bit of hope for Maddie's family.

Thank you again.

 

[swtnikki]

My prayers & thoughts are w/you. The first guy that I ever went out w/has CF, & though I don't talk to him anymore, I still think about him now & then. I know he's still alive, 'cause he called me couple of months ago, & he's about my age, 26 yrs. old. Hopefully she'll live a very long & healthy life.

 

[barkley]

one of our dear friends was diagnosed within months of his birth. he has struggled with the disease but is living proof of the advances in treatment-he is 47 years old. he was one of the first patients who tried steroid therapy in our area and it made such a positive change in his health (he had some "meat" on his bones for the first time in his life ).

the research is moving forward, and there are wonderful cf support groups that can help a family deal with the emotional and physical challenges.

given that his parents were always told "this birthday will be his last" he is proving that with effective treatment and a strong family/friend support system in place everything is possible.

best wishes for this family

 

[taximomfor4]

Got my prayers too. My sister's long-term relationship (all but married for 11 yrs now) has CF. He has always considered himself quite lucky that his is not as severe as some. He has lung issues and absorption issues, has been with the same specialist since he was a child. This doc has been a HUGE help, making sure he got the necessary meds. Since he was relatively mild, he got into lots of studies... overnight hospital stays a lot of the time, but decent compensation and a HUGE dose of good feelings for contributing to research.

If you have any questions, feel free to PM me. He would probably be quite open to communicating with the involved family or whoever needs to vent.

That said, there are definitely degrees of severity with CF. I have 2 cousins with it (sisters). One is considered a moderate case, got a feeding tube around 2 yrs old but only for night-time supplemental feedings; the second is TERRIBLY affected. Has always had a feeding tube...mom goes to her school every day to feed her through it. Also gets breathing assistance. She has never been mobile, and has never been able to adequately oxygenate herself without continuous support. Even with the best therapies, she will not participate in everyday average-kid activities. She is not a mild, or even moderate, CF case. I'll be praying for little Maddie, that she be a milder case and that the research that is so promising moves forward quickly.

Beth

 

[poochie]

Thank you for your donations, you know who you are!!!!