“Coon Rapids family copes with CF disease”
– ABC newspapers November 2, 1979

Two-year-old Tessa Weber acts and looks the same as any other child her age.

She is except that Tessa suffers from Cystic Fibrosis, the most common genetic disease in America and the number one genetic killer of children.

From her parents, Robert and Carol Weber 10601 Arrowhead Street NW Coon Rapids, the diagnosis that Tessa has Cystic Fibrosis was a shock.

Not only was it not discovered until she was nearly 10 months old, but Tessa’s older brother Aaron, 4, has no trace of the disease.

Yet Tessa got the disease from her parents. “The disease is hereditary, although no one in Bobby or my family has it,” said Mrs. Weber. “We were both carriers. Aaron is probably a carrier too.”

There is no way for parents to know they are carriers of CF at the moment. But Mrs. Weber said researchers are trying to develop tests so people can find out if they are carriers of the disease.

Nor is there any known cure for the disease that clogs the lungs with a thick, sticky mucus making breathing difficult.

Research and the treatment of the disease over the years spearheaded by the Cystic Fibrosis Foundation, has significantly increased the life span for CF sufferers.

Twenty years ago most CF patients died before reaching school age. Now 50 percent of CF sufferers are close to 19 years of age, and many are living into their 20’s and 30’s and older.

But the treatment is a life-long proposition, is very expensive and complex. The Webers have been fortunate that the costs have largely been absorbed by their medical insurance plan.

Treatment for Tessa has involved some $25,000 in doctor’s bills in the last year, and the purchase of two expensive pieces of equipment – a mist tent in which Tessa must sleep, and a compressor which helps in clearing the mucus from her lungs.

But there is more to the treatment than that. CF also interferes with the digestion of food by interrupting the flow of digestive enzymes from the pancreas to the intestines.

It means Tessa has to take 12 different kinds of pills every meal so that she can keep her food down. In addition, there are certain foods she is unable to eat, like sweets, pizza, pork, and junk food.

And she is required to take an enormous amount of vitamins each day. The Webers estimate it costs them $8 a week to provide the vitamins necessary for Tessa.

The Webers have religiously followed the treatment program laid down by the doctors at the University of Minnesota CF clinic, the only one of its kind in the five-state area. Tessa also makes periodic trips to the clinic to have doctors check on her progress.

The Webers have seen Tessa’s health improve considerably from the sickly, undernourished baby, who could not keep her food down before the CF disease was diagnosed.

Although she weighed in at 7lbs 9.5ozs. when she was born, Tessa only weighed nine pounds when she was a year old. Since being on the CF treatment program, Tessa has grown to be the normal height and weight of a two-year-old.

The Webers believe in talking openly about the disease and its effect on their family. “It is nothing to be ashamed of,” said Mrs. Weber. “Our aim is to give Tessa a full and active life as possible.”

Mrs. Weber said she was a “basket case” when it was found that Tessa had CF. “I had heard about the disease before, and in fact, Tessa had the symptoms of the disease when she was born,” said Mrs. Weber.

“After she was born she was taken immediately to Children’s Hospital to have part of her intestine taken out. That is usually a sign of CF, but they did not find it then.”

Through the first nine months of her life, Tessa was ill. In fact, she contracted pneumonia and also had a collapsed lung. It was then that CF was discovered.

Mrs. Weber said the treatment involved keeping up the bronchial drainage. If treatment is neglected the mucus will form in the lungs.

Tessa is hooked up to the compressor three times a day, four when she has a cold, and the Webers also use what is called a “clapping” technique to clear the lungs.

This involves literally hitting the child’s chest area to break up the mucus. This is done twice a day for 45 minutes at a time, more if Tessa has a cold. After years of this, a parent’s hands can become deformed.

Mrs. Weber said it has been a “traumatic” year with little or no social life since CF was diagnosed.

There are degrees of seriousness of CF, but Mrs. Weber said she has been “too scared” to ask how serious Tessa’s condition is.

“There is a good chance CF patients living a good, full life these days, so we hope for the best,” she said.

Mrs. Weber said the treatment program calls for Tessa to get plenty of exercise, although CF sufferers do tire easily. “Tessa is not a retarded child,” said Mrs. Weber. “She has all her limbs and faculties, and in fact, CF sufferers are known to be overachievers.”

“The more exercise they get the greater lifespan because it helps to keep the lung open. But CF patients are also very susceptible to diseases, like pneumonia, and also common colds.”

“Tessa is a happy child, and it is hard to accept that she has something like CF. It is scary.”

Tessa has been named one of the Cystic Fibrosis Foundation’s poster children for 1979.

And as part of the foundation’s fundraising efforts, bowling centers across the state are staging the third annual bowl for breaths in the next two months. Bowling lanes in Ramsey, Fridley and Columbia Heights are participating in the campaign Sunday.

This article has gotten pretty old and unfortunately beaten up over time.

I have this unruly belief that anything is possible, and much of that is because of the many stories I heard when I was little. My mom said, take it as you may of course, but “You were starving for those first nine months.”

Over time I found five different hospital admission notes. The progress notes, test results, and admission and discharge notes. The stays vary in length between two and four weeks right up to my diagnosis.

My mom then said that she brought me into doctors often, knowing something was wrong. Then, finally, after being sent home with a collapsed lung apparently, as someone didn’t read the chest x-ray correctly, a doctor called my mom the next day and said, “I think I know what Tessa has.” It was at that time he gave my mom the name of Dr. Warwick and the University of Minnesota CF Center.

During the time of getting the correct diagnosis, I was admitted for four weeks. The admission notes said, “I had the development of a four-month-old.”

She said even after diagnosis, “you still were not eating.” They were giving me this potent, thick drink probably loaded with vitamins and nutrients, but my mom said, “It stunk like rotten eggs.” She said, “you weren’t a baby anymore. You didn’t want it anymore.” My mom then, threw up her hands and called the doctor and said, “I can’t do this.” She said, “I was feeding you eight hours a day while dad was at work, and you just kept refusing and spitting and vomiting everything up.”

They admitted me again and my mom didn’t visit me, although my dad did. She cried when she told me about this. She said, “I couldn’t. They were judging me as a bad mother, and I just couldn’t.”

There are lots of things you could say about that I suppose. But, I am not going to say anything. She reached her threshold.

Finally, during my stay, my mom got a call from one of the nurses and said, “The best nurse who can get any baby to eat, couldn’t get Tessa to eat.” They – in desperation I am guessing, decided to try real food. They gave me mash potatoes and I ate them up and they stayed down.

It says in the notes, “Tessa is eating.”

I think it is interesting because when you treat someone like they are human, they become human.

I also think people are innately survivors. We know how to do this. We know how to live and what we need to live. We know that if we work and keep trying, better things are coming.

I wasn’t going to go into all this. I don’t know how much those beginning years have formed me; however, they say beginnings are with us forever. I, obviously, consciously remember nothing.

What I do know – everyone who helped me, held me, tried to feed me, needed to have –

Patience and with that, time built in.
Hard work, routine and without waver.
A whole lot of love, and with that,
Positive intention.

Still, at 12-months old, I only weighed 12-pounds. There was still much work to be done.

I didn’t get here by myself, as no one ever has.

This is part of my story but is not unique in many ways.

I believe everything in this whole-heartedly.

Summer of 1978, right before diagnosis:

Then shortly after diagnosis, about 15-16 months old. There was no exact date on this pic.  Ka-boom! This is what food looks like.

With my Dad. One of my favs.

First Christmas post-diagnosis. Life is looking up!

Pretty old pic from the newspaper article.

Much love. ❤️ Thank you for reading.

Correction in the article:

“Cystic fibrosis” is not a proper noun, should be in lower case.

Note: the term “CF sufferers” is still written in today’s literature. I despise it.