Ella was diagnosed through newborn screening in August 2006. Every day morning and evening her parents do chest percussions to help keep her airway cleared. Before any snack or meal she must take enzymes to help her food to digest and nutrients be absorbed in her body. She has regular visits to the pulmonologist for checkups; cultures are done regularly to make sure she is clear of any bad bugs.
To look at her, one always says, "She looks so healthy." So far, she is, considering she has cystic fibrosis. No matter how hard her parents and the medical team work to keep her healthy, sometimes it just doesn't happen that way.
I posted about a young boy who had a double lung transplant recently. He is home with his family now. His mother wrote today in a post that she just loves watching him breathe. She loves watching him eat. She loves watching him smile again. Because he is so young, they wondered if it was the right thing to do, but they know now that it was.
I attended a CF Education evening last Friday night at All Children's Hospital in St. Petersburg. We were informed of the drugs that are in the pipeline that are going to make a real difference in the lives of CF patients. Drug development and drug trials are financed in a large part by the CF Foundation. Eighty-nine per cent of money given goes for research.
If you would like to donate, go here. Ella's parents, Sarah, and I will thank you from the bottom of our hearts.
7 comments:
I will see what I can do, Beverly.
Will certainly check it out. I wish I could be there for the walk in March.
She does look remarkably healthy and that must be a blessing for the whole family. Hope it stays that way for a long, long time.
There are some wonder drugs on the market and more to come in the future. Remember when penicillin was discovered? Imagine not having antibiotics to clear up infections? I do hope a drug for CF will be found soon.
Minnie mouse flip-flops! What a good way to herald the arrival of spring. I think I'd have worn them too!
Hugs.
I hope that soon ALL states will do the newborn testing for CF.... AND that new and affordable medications are available.
Does Ella wear Grandma out?
That photo of Ella is priceless: Determination is written all over her face!
I love the determination on her face - such a cutie.
Love this photo of Ella.. look at her go!! :-)
Sweet baby girl....
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