Faces Of: The Stewart Family Battles Cystic Fibrosis

Meet the Stewart family; Yvonne and James Stewart reside in Rocky Point with their two children, Gwendolyn, 12 and their son James, 10. 

James is an active ten year old boy, he plays baseball with and has taken an interest in acting and performing.  Most recently he played the roll of "Tiny Tim" in production of A Christmas Carol.  The role led to a commercial spot with Lexus of Smithtown. 

At age four James was diagnosed with Cystic Fibrosis.  Cystic Fibrosis is an inherited chronic disease that affects the digestive system as well as the lungs.   

In the 1950's, few children with Cystic Fibrosis lived to attend school.  With advances in medical research and treatments that is no longer the case.  Since 1955, the Cystic Fibrosis Foundation has been dedicated to the pursuit of finding a cure. 

Yvonne and James sat down with the Miller Place-Rocky Point Patch to share with us what battling Cystic Fibrosis is like for James daily, as well as how people can aid in finding a cure.

Can you tell us how James was first diagnosed with Cystic Fibrosis?

Yvonne: For four years I was going to doctors with James saying there is something wrong that you're missing. He had every symptom from the beginning. There are different genetic combinations you can have and he has the most common and most severe. He has all the digestive and respatory issues,  it's called delta F508, that’s the genetic combination. If I had known more about Cystic Fibrosis when he was born and matched symptoms I would have known.

He was tested for Celiac's, Mal absorption, a slew of gastro disorders and was negative for them all. Every winter he had a cough that wouldn’t go away.  I don’t like to keep giving antibiotics so we would try to treat it therapeutically. But it wouldn't go away and finally we would put him on the antibiotic, and it would go away. This happened every winter.

There were many digestive issues too. He was very distended in his belly, he had skinny little arms and legs. He could eat like a bunch of bananas and a half a dozen bagels in one day and still go to the bathroom a lot. He was not absorbing any of it, he has to take enzymes now to absorb nutrients, specifically fat.

James: I take enzymes that are pills, I take four for a meal and two for a snack always.

So is Cystic Fibrosis something that is included in the newborn screening tests they do?

Yvonne: Up until maybe 2001 in New York the blood test for Cystic Fibrosis was not in the newborn screening. Now most of the states have included it in their newborn screening.  James was born in Arizona ,and I don’t think even now-until this day- Arizona tests for it. Its varies state to state though.

Cystic Fibrosis is inherited?

Yvonne: I carry the gene and my husband carries it as well so their was a 25 percent chance our children would have Cystic Fibrosis, we of course didn't know this.  It’s a recessive gene, for you to have Cystic Fibrosis you have to get the recessive gene from both parents to make it come out.

What are some of the daily day to day treatments and medications James does?

James: I have a vest I put on, and hook up the hoses and turn it on and it inflates and shakes me.

Yvonne: It does chest physiotherapy. Before this they had to do it themselves. They’ve gone from hanging kids upside down and pounding on their chest and back in the 60's, early 70's they used to put the Cystic Fibrosis kids in steam tents to do their medications. They learned they are actually creating a huge giant petri dish and it was worse for them.

James: There is also a nebulizer I put medications in, and they help me cough up mucus and clear out my throat. They all have a specific thing they do.

Yvonne: We do the nebulizer twice a day with the vest and it's about two hours each time. He has been doing this daily everyday two hours a day since he was four and a half years old.

James: Then if we were to go upstairs, I have medicines up there. Sinus irrigation and Singulair and Zyrtec I take at night.

Yvonne: He is so good about it all. I was thankful for it. Being four and all of a sudden having to wear this vest and take all these pills and blood tests, cat scans. He just went for a three hour blood test for glucose tolerance because a secondary affect of Cystic Fibrosis is they can become diabetic, because the pancreas is so affected.

What are some of the questions you get asked regarding Cystic Fibrosis?

Yvonne: A lot of people don’t know a lot about it.  For me I am extremely open because knowledge is so important. There are 30,000 people that have it, but there are thought to be over 300,000 thousand carriers of the gene walking around not even knowing, we had no idea.

Biggest question I get is if James has restrictions, like activity restrictions, food restrictions. The answer is no. Exercise is important for him, it’s the lungs. The more you exercise the more your lungs are working and taking in oxygen. It helps him, it can essentially do the same thing that his vest is doing. Exercise, eating well, treatments.

James: Yeah I eat fruit, vegetables and steak and potatoes.

Yvonne: I hope that what we have been doing with him has kept his immune system healthy and strong and when and if he does get sick that an antibiotic will be effective.

Can you tell me about the Cystic Fibrosis Foundation and the walk- Great Strides -coming up on May 21st?

Yvonne: Well, there is no federal funding for Cystic Fibrosis because there is only 30,000 people in the United States that actually have it. So it's not a money maker for the pharmaceutical companies or the government. It is only looked at by the pharmaceutical companies once the Cystic Fibrosis Foundation does the research and clinical trials. When advocacy for a drug is shown, then the pharmaceutical companies will come in and take it from there. It takes funding to get to that level and the Foundation does all of that on their own.

The Great Strides Walk we have participated in every year since James was diagnosed. This is the foundation's biggest fundraiser yearly on Long Island.

I created our page through their website, and I wrote the letter and I sent it to people. I emailed it out to everyone and set the financial goal a little high this year. In the past years I kept it much lower and have met the goal. It has gotten much harder, just because of the state of the economy and not everyone has money to donate. Its hard for me to ask every year but its my one fundraiser I do each year and it's so important.

Since there is no federal funding and The Cystic Fibrosis Foundation's fundraising model has been touted as one of the best fundraising models out there. They ‘ve been looked upon by other charities to be emulated because 90 percent of every dollar goes to research.

What is the most important thing The Cystic Fibrosis Foundation does?

Yvonne: They’ve come a long way. They have gone from not knowing what the gene was to then finally isolating it and knowing what causes it. It’s a lack of a protein, so it's treatable. They are able to slow the progression of the disease. If you were to go on the Foundation's website you can see the drug pipeline and some are in trial phase. There are a few medicines my husband and I watch all the time and are routing for, we need funding to get them to the next level though.

If someone was interested in donating or walking how does that work?

Yvonne: People can join my team if they wanted to, from my page and walk with Great Strides. They can fundraise and have a page, we have a team goal and an individual goal as well. Our team name is James' Mighty Walking Warriors.