Filed under: Myths, Support, Testimony | Tags: Cystic Fibrosis, Kids Wish Network, life, Walt Disney World
Star Wars, Chicago White Sox and now Walt Disney World. These are a few of Matthew Marzke’s things.
Matthew is a cute six year old boy who has CF who was nominated by a former babysitter, Marilyn Haddon, to the Kids Wish Network to win a wish. His was to go see this guy in the picture.
How cool!
“Matthew is very special to me. I cared for him for 5 1/2 years, and I got attached to him,” Haddon said. “I knew his parents wouldn’t be able to send him to Disney World because of the expenses related to his disease.”
According to the story from the Kankakee Daily Journal, the Kids Wish Network sent Matthew to the Animal Kingdom, Sea World, MGM Studios and Magic Kingdom. He’s SIX! And some people still want to tell me you can’t “really” live beyond Cystic Fibrosis. Yes, you can!
His favorite part of the trip was riding roller coasters for the first time, said his mother, Penny Marzke. He also enjoyed Space Mountain.
Dreams really can come true. First, Walt Disney World. Next, a cure for CF. Thank you Jesus.
Filed under: Hope for a Cure, Research, RX | Tags: Cystic Fibrosis, Hope, medication, Research
My parents don’t like the car – at all. But they don’t mind the headline when it has to do with a new drug that scientists are very close to making – PTC124.
This sounds good too for kids like me, looking to live beyond CF means we need some help. This article from Reuters shows it may be closer than we think.
A new kind of cystic fibrosis drug, designed to bypass a genetic defect to treat the disease, has produced promising results in mid-stage clinical trials, Israeli researchers said on Thursday… PTC124 can bypass the defect in patients’ protein-making machinery and improve the functioning of cell membranes, Eitan Kerem and colleagues of Hadassah Hebrew University Hospital, Jerusalem, reported in an online edition of the Lancet journal.
Now, that sure sounds fancy but what it means is hope. There are smart people around the world looking everywhere for a cure for Cystic Fibrosis. With my faith in Jesus, the love of my family and stories like this is why I know kids like me can live beyond CF.
Doesn’t that make you happy too?
Filed under: Hope for a Cure, Parental Advisory, Research | Tags: breakthrough, Cystic Fibrosis, Faith, God, prayer, Research
Hey, this is Makenzie’s dad.
Any child of God knows there is some biblical issue with the research and cultivation of stem cells. It’s intrusive on babies, even though some scientists still don’t think you are an actual baby until a doctor slaps your fannie.
That said, now there’s some research saying stem cells could help create replacement organs damaged by diseases such as Cystic Fibrosis.
Now, by adding a single gene into the DNA of a human embryonic stem cell, scientists have been able to grow pure batches of the early entoderm cells that form the essential organs of the digestive and respiratory systems. This includes the lung, liver and pancreas, and raises the prospect of new treatments for diseases as diverse as diabetes and cystic fibrosis.
Talk about being between a rock and a hard place. Only the rock is actually THE rock of Jesus and the hard place is knowing Makenzie bravely fights CF daily.
The research isn’t close to being completed, which is why I had to find this story in Abilene and not in the New York TImes. Nevertheless, it does cause a father and a son of God to scratch his head, look at his daughter and say, “OK, Jesus… now what?”
What about you?
Filed under: Hope for a Cure, Life in General, Myths, Support | Tags: baseball, Cystic Fibrosis, Faith, Hope, life, sports
My dad loves sports, including baseball. When I read this story in the Patriot Ledger, I not only thought of him but I also jumped for joy! Kids with CF get it! Yes, we have Cystic Fibrosis, but it doesn’t have us!
Read the headline of the story:
Teen won’t let Cystic Fibrosis stop him from competing in Babe Ruth World Series
Why should it? He just has to watch his breathing when he runs the bases. Other than that, he is just as strong as the rest of his teammates. This is so cool. Here’s more of the story:
“It means everything. It’s a once-in-a-lifetime chance,” Dennis [Sullivan] said. “It’s a big deal just getting a chance to play.”
Dennis said he almost didn’t try out for Quincy’s team of 14-year-olds because he is smaller than many of his peers, a result of the cystic fibrosis.
Dennis made the team as an alternate and got a chance to play for his hometown in the playoffs. He had a big hit in the team’s last playoff game, starting a six-run rally that tied the game, Dennis said.
Sweet. He gets it. He does it. And he lives it. Who says kids with CF can’t “do what other kids do”? We may nto be able to do it as long and as hard, but we can have fun just like anyone else… at least I do. 
Check out the video his mom made and you can’t help but cheer for him, pray for him and watch out for more like him. Amen for this story!
Filed under: Hope for a Cure, Parental Advisory, RX | Tags: Cystic Fibrosis, Hope, medication, Research
At least that’s what this story in Forbes says, and the pharmecutical company is willing to pay up to $437 MILLION to do it.
The medicine, made by tiny PTC Therapeutics, aims to correct a genetic flaw called a nonsense mutation. These mutations cause 13% of the 10,000 cases of Duchenne in the U.S. and about 10% of the 30,000 cases of cystic fibrosis, according to PTC.
Could you imagine all that money focused on finding a cure for CF? Now it’s easy to get my hopes up for Makenzie and her condition, but apparently, this organization has a track record:
“Over the past two decades, Genzyme has successfully developed four therapies for patients with severe genetic diseases. PTC124 is a powerful new approach that holds great potential to help [cystic fibrosis and Duchenne muscular dystrophy] patients and many others with a variety of devastating diseases,” said Henri A. Termeer, Genzyme’s chairman and chief executive officer.
There’s always something to new to pray about with CF. I’ll just add this one to my growing prayer list.
Filed under: Hope for a Cure, Life in General, Support | Tags: cf, Cystic Fibrosis, Faith, Family, friends, God, Hope, Hope for a Cure
Hello world!
My name is Makenzie – also known as the CF Vet. That has two meanings, you know.
- I have been living with CF for years. Now that I am almost a teenager, I have learned a few things to help and tricks of the trade for hope. That’s why God led me here.
- I love animals and one of my goals in life is to become a veterinarian. Dogs to ducks, cats to canaries, snakes to well… I’ll stop there.
I pray for a cure for Cystic Fibrosis daily, but I also know there is more to living with it than prayer. My parents help me study, learn and live beyond CF, which is why we are here today. I hope this will become a group of friends and family that lives with CF every day, and wants to learn to live beyond it.
If you want to learn more about me, visit My Place. God bless you!
Filed under: Hope for a Cure, Life in General, Support | Tags: 65 Roses, Cystic Fibrosis, videos
Did you know that?
It’s a great page with lots of cool videos, groups, friends and links that will have your parents banging on your bedroom door to get off the computer.
Oh, and in case you have never heard Cystic Fibrosis called “65 Roses”, you’ll love this video
Filed under: Hospital Time, Parental Advisory, Support | Tags: Cystic Fibrosis, hospitals, outreach
As you know, CF is a global condition, so when I (this is Makenzie’s mom FYI) find stories like this one from the Irish Medical Times, it makes me realize just how many kids are dealing with Cystic Fibrosis worldwide.
The opening, this month, of a temporary eight-bed unit for cystic fibrosis patients in St Vincent’s Hospital will be a ‘huge benefit’ but will not address total demand, the director of CF services there told Irish Medical Times. Dr Charles Gallagher said the new unit is a ‘step in the right direction’, but until the new ward is built, patients will continue to be scattered throughout various wards as part of infection control.
Initially, I just thought this story looks like the Irish medical community got together and said, “Eight kids? That’s all we could find with CF in this entire country? Sounds good to me.” Wel, it made me laugh.
What is promising about this article is medical experts globally see the need for specialized care for kids with Cystic Fibrosis. The medicine, the shots, the stress – all that requires its own area of the hospital. So, congratulations for Crumlin Hospital and the Cystic Fibrosis Association of Ireland (CFAI) for taking that giant “step in the right direction.”
It’s a long walk, I know. But we are getting there. Thank God for little steps.
