Tulsa cystic fibrosis crusader passes away

We just covered this in Biology, and I have a great friend who has lost a daughter to CF. Praying and working towards a cure as I journey on into Medicine. :-)

Please read the second posting down first, then read the one above it.

She came home when she was 5 1/2 mos old. 2 weeks later she was back, stayed another 2 wks in Tucson, came home, 2 weeks later she went back to Tucson. My son in law was stationed in Yuma AZ, but that was to soon change and they went to San Diego. She has been in the hospital once, and the CF dr she has is Dr W. He has worked with my daughter Becky, when Kylie has been sick, because of her hubby, Nick, was deployed. She knew no one and didn't have a sitter. The hospital wouldn't let Reilley come to see Kylie. We are about 8 hours North of San D., so we have gone down there to watch Reilley, while Becky is at the hospital. Since that time 2 1/2 yrs ago, Kylie hasn't been hospitalized. It is a miracle, that she is still alive and we celebrated her 2nd birthday this last June. I was on a couple of FB CF forums but it seemed like every month, there was a death reported, and I just couldnt take seeing kids from birth to 18 yrs of age passing away. One thing I would like to fight in our Federal laws for transplants is that People are mentally retarded cannot receive transplants. They are not considered to be useful to society, so therefore, why waste an organ on them. It is an archaic law that needs to be changed. In my city, Stockton CA, I see people with DS working at the theatre, grocery stores and many other businesses. So to say they are not useful in society is BS imho. May Lo rest in peace, and I will say a prayer for the repose of her lovely soul. The book mentioned sounds like an interesting read. I have read The Power of Two and seen the auto biography on On Demand.

I have a 2 yr old granddaughter with CF, (my daughter's daughter). I, myself, have a child with Down Syndrome and Autism. You might say that Kylie's mom had training to deal with a disabled child. Kylie, my granddaughter, was born 2 years ago in June. She had jaundice, so she was in the hospital for a few days more than normal under the lights. we came home on day 6, and 2 days later, she was taken by ambulance to the hospital. I had a cold, and I stayed away from her when she came home. The second day home, my daughter brought Kylie to me, and her breathing was so incredibly labored, that I told my daughter to call 911. The EMT's and fire dept came. Becky rode with Kylie to the hospital and my son in law, who is a Marine, followed. Hubby, my youngest daughter with DS/Aut, stayed at the house and took care of Kylie's big brother, Reilley. It turned out she had MRSA pneumonia and MRSA sepsis. When she got to the hospital, she coded, and they got her back. They had her there for a week, and on my birthday, they told the kids that they couldn't help her and had her life flighted from Yuma AZ to Tucson AZ, where the CF org is in AZ. They then diagnosed her with CF. Her left lung collapsed and she coded while we were there, and they got her back. We left to come home to Stockton CA, a 16 hr drive. A week later I called PICU to see how Kylie was doing and the nurse told me her right lung had collapsed and she had coded again. I asked if we should come and the nurse said she wasn't allowed to tell me what to do, so I asked her if this was her granddaughter, what would she do. She said she would come and be prepared to say g'bye. Well I don't say g'bye, but I did have a serious discussion with her. I told Kylie, if she needed to go to Jesus, then she should go. But if she needed to stay here, she really had to fight the fight. That day her condition turned around and she fought hard. She was on a vent for 4 1/2 mos, another month to recover from the vent.

I just want to say thank you to Fox23 for writing and telling this story so beautifully. My little sister, Ponie, died July 9, 2012 due to Cystic Fibrosis. A reporter in Sand Springs wrote a story for her but it was poorly written and focused not on her but others in the story. It made me really sad. This story about Lo was so well done....it really made me cry. Breathe easy Lo.