These are real stories from real families who have children that needed the help from one or more of our charities we support.  Please take the time and read some of the incredible experiences families endurred and the success due to the help from All Children's Hospital, Ronald McDonald House and The Juvenile Diabetes Research Foundation.

Cassandra Berntsen

It is amazing how time flies. Exactly seven years, nine weeks eight hours and forty four minutes ago, my daughter Cassandra was born. (June 9th 2000) Rene, my wife, was already at the hospital for about seven days prior to Cassandra’s being born, because her water broke early. The doctors at Sarasota Memorial did some tests and determined there was enough water left for the baby to mature before inducing labor. Seven days later the baby was coming and nothing was stopping her. At 10:00am I was called to the hospital by my wife, who said, “You might want to get here - I don’t feel very good.” So I got there very quickly arrived about 10:10am to find my wife in her bed parked in the hall. They moved her into a makeshift receiving room where Cassi was born five minutes later.

The doctors got Cassi breathing after a few scary moments of not hearing anything. Rene took a nap as I looked at Cassi under the heat lamps. She looked so healthy; she had weighed 6lbs 11oz.. Rene got to hold her for a few minutes and then the doctors took her to neonatal unit were they did some tests. Doctors already had a heads up that there may be a problem after reviewing some Ultrasound photos taken when Rene was only four months pregnant. The photos revealed Cassi’s kidney to be enlarged. This meant there was a blockage in the large intestines not allowing her bowels to work properly. With this information the doctors at Sarasota Memorial decided to drain her stomach and arrange to get her to All Children’s Hospital. After draining the fluid from her belly she only weighed 4lbs 4oz. They immediately transported her to St. Pete. This was at 12:30. Both Rene and I were concerned and did not want to have our baby away from us. The doctors released Rene from the Hospital at 3:00.

After being in the hospital for seven days (having a baby just 4 hours and 44 minutes ago), Rene was ready to go. We drove directly to All Children’s where we were brought to the Neonatal ICU. Luckily Rene (still just a few hours later after giving birth to Cassi) was strong enough to walk what seemed like miles to see our daughter again. When we got to her bed they had started IV fluids - they could only find a vein in her head that was strong enough to take the IV so they’d shaved what little hair she had and stuck needles into her head. Not what we wanted to see. Finally the doctors sat down and explained what needed to be done. They explained the blockage in her large intestine (as it was not completely developed) had closed itself off. The bad news was they did not know what part of the intestine and they had to do surgery. They planned to do surgery 7:00am on the 10th. They also told us about The Ronald McDonald House where we could go to get rest, much needed by Rene. So Cassi was not even 24 hours old and they were taking her away again.

After doing our chores early at the RMDH we got back to the NICU where we got to see Cassi one last time before she went to surgery. Rene and I had to wait in the waiting room with the rest of the families. About 8 hours later (it felt like the longest wait of our lives) we were finally called to a private room where we met with the doctor who did the surgery. The Doctor told us that she was stable and back in NICU. He explained how he had to remove every inch of her intestines, large and small, and physically inspect every inch until he had found the bad part. He cut the bad part out and sewed the two ends together, then put her back together. Due to the medications and the trauma of the surgery Cassi was unable to breathe on her own. He took us back to see her. She was hooked up to everything but the kitchen sink. There were tubes, wires, hoses, and more hoses connected to her, alarms, beeps and a bunch of other sounds were coming from all around her. We never got used to them but it was easier when we understood what everything was for. Cassi was starting to come out of her induced sleep, and began to cry, which was hard for both Rene and I, because we couldn’t do anything to console her.

About three weeks later we were allowed to hold Cassi again. She was just off the breathing machine and finally breathing on her own. Then we got news that Ecoli was found in blood tests taken when she was born and a Broviac needed to be put in. The Broviac was needed because her veins in her head were no longer strong enough. A Broviac is an I.V that is threaded through the main arteries and goes directly to the heart. In fact they bump the heart with the catheter, pull back slightly, and then set it in place. She had an infection that needed major antibiotics and this was the safest way to administer what she needed. So she was taken to surgery again. This time she was back within a couple of hours and did not have to go under as hard - so breathing was no problem. Being fed through a tube for three weeks meant we were still waiting for her first poop. It was about 3 more weeks after that when we celebrated with the first poopy diaper. This meant the surgery was a success. All of her insides were finally doing what they should. The antibiotics may have helped push things along. She was on I.V. fed antibiotics for about 3 more weeks. She still could not eat on her own but was slowly picking up things she should have learned in the beginning.

Day 76 at NICU: We received word that in a few days we could bring our baby home, after just one more quick surgery to remove the Broviac. The Broviac was removed that afternoon and we started the 3 day departure process. Still in NICU, we had to feed and care for her just as we would at home, but under their supervision. There were many procedures on how, what, and when to feed our baby. We “passed” with no problems and on day 79 we got to bring our baby home. She had no more complications and lives a very healthy life.

If it wasn’t for All Children’s Hospital and their love for children our Cassi wouldn’t be here today. If it wasn’t for The Ronald McDonald House, we would have had spent many nights in our car. The care and love we received from total strangers was incredible.

One year ago this week we called upon All Children’s again when Cassi was diagnosed with Diabetes. This time she only spent about 8 days and is doing great. She takes insulin 2 times a day and does very well checking her own blood sugars, and giving herself her injections.

Thank you for helping my child have a future. That is what Kimal Lumber Company’s “Building to a Cure” is all about. “So That a Child May Have a Future.” Also, “Racing to a Cure” will be supporting “Building to a Cure.” The race car is in its final stages and will be traveling, starting mid August, to bring revenue to The Cure. If you are interested in joining our Race Team, please contact me. Thank you again for everyone’s support.



Thank you for reading my story.




Samantha Bass, This is a very special story.  Samantha is the little girl who is featured on the hood of the race car.  She is an amazing little girl.  Thank you Cindi and Vahn for all your support.

SAMANTHA

There are lots of diapers at Samantha’s house these days, and no one seems to mind. For most new parents, changing them is an unpleasant chore. For Samantha’s parents, it’s a reminder of how close they came to losing their precious little girl – and just how lucky they are.

Cindi and Vaughn welcomed their first child into the world last July 25th. Everything about Samantha seemed perfect until twelve days later, when she started sleeping through her feedings. At the local emergency room in Sarasota, they learned Samantha was severely dehydrated.

“We thought it’d be a couple days and she’d be fine,” Vaughn says. “Just a little dehydration, she’d get some IV fluids and that’s it.” But as a precaution, they opted to have Samantha transferred to All Children’s for further care. By the time she got there, Samantha needed the Pediatric Intensive Care Unit, where pediatric critical care specialist Perry Everett M.D., was the physician in charge.

“Newborns who become dehydrated can sometimes have hypercoagulation, which means their blood tends to clot in places that it shouldn’t clot – particularly in blood vessels,” Dr. Everett explains.

In Samantha’s case, it was an extremely rare and very big clot in the aorta – the main artery of the body. “That clot extended into the arteries that feed the kidneys,” explains pediatric nephrologists Sharon Perlman, M.D. “And therefore, her kidneys couldn’t work. They couldn’t clean her blood. They couldn’t make urine. She had pretty severe kidney failure.”

With no way to make urine, fluid began to build up in Samantha’s tiny body. Almost overnight, her weight doubled.

Cindi looked at her baby girl and saw a movie ogre: “a big, pale Shrek.” Vaughn adds, “there was so much fluid that when you’d touch the back of her head, the skin would actually wrap around almost half of your finger.”

“We had a newborn who potentially needed dialysis – which is extremely difficult and dangerous,” says Dr. Everett. “And then we had the issue of what do we do with the clot? Using drugs to try to dissolve it is dangerous in anyone. But in a newborn it’s particularly dangerous because they’re already prone to have bleeding in their brain due to their age and brain structure.”

With every hour that the drugs didn’t shrink the clot, Samantha’s chances for survival dimmed.

“The clot was getting bigger,” Dr. Perlman recalls. “Since she had obviously failed the more conventional therapy, we needed something more aggressive.”

But what? The question dogged one of Dr. Everett’s associates, pediatric critical care specialist Michelle Smith, M.D.

“You wish you could find something to make the outcome better,” Dr. Smith says. “Here was this baby born with no medical problems – and she was headed for tragedy. If there’s something you could do to change that course, then you do everything you can. That meant looking in the literature where, luckily, someone else who had experienced this had written about it.”

A single article from Johns Hopkins University chronicled experience with this rare condition. Doctors there had snaked a catheter through their patient’s tiny arteries to inject a powerful clot-busting drug directly into the blockage. The risks were extremely high, but the results were great. The young patient survived.

All Children’s team proposed using a newer clot-busting drug – TPA – commonly used for adult heart attack victims. First they’d have to explain the risks to Samantha’s parents and let them decide. “This was probably – for the patient – one of the more risky procedures that I’ve ever been involved in,” recalls neuroradiologist Kevin Potthast, M.D. “I was very frank with the parents, telling them that Samantha could have severe complications or die from this. It was an emotional conversation.”

“She could have had a piece of the blood clot dislodge,” explains Vaughn, “and that could go to her brain, her lung, her heart – which would have been life-threatening. That was the risk.”

But Dr. Everett says, “Everything was risky. It’s not a matter of making the right decision. It’s a matter of making a decision and hoping that you made the right one.”

They chose to proceed. Amid the monitors and equipment in All Children’s Catheterization Lab, Dr. Potthast first had to find the correct artery in Samantha’s groin where he could insert the tiny catheter tube for its winding trip to her aorta. Trouble is, at that point Sammie was “a big swollen baby – and all the usual landmarks that you use were difficult to get to.”

Even with the catheter placed in the clot and the TPA injected, Sammie’s struggle was far from over – especially with all the blood thinning medications that had been used unsuccessfully to reduce the clot.

“That’s one of the risks of this procedure,” Dr. Potthast explains. “We’ve made a hole in one of her arteries and a hole in her tissues and now it’s bleeding. And the nurses who were taking care of her had to hold pressure on her leg. For the next 36 hours, somebody had to be there with their hand on Sammie’s leg to keep it from bleeding.

“You have to hope that the clot dissolves and that her system can deal with the insult she’s already had – that she can not only reestablish blood flow to the kidneys, but that the kidneys will take that blood and use it.”

All they could do was wait and watch for progress on ultrasound images of the clot. And finally, Dr. Perlman remembers, came the “morning of delight.”

“Our ultrasound technologist was looking at the size of the clot and mentioned almost as an afterthought that Sammie had a bladder full of urine. We didn’t know whether to laugh or cry or dance or jump and I think we did a little bit of all of that. When a baby hasn’t peed in two weeks, we get pretty excited about that! We call it ‘liquid gold’ for a reason.”

It would be another two weeks in the hospital before the big celebration – before Sammie shed all the lines and tubes and excess fluid and went home. The family’s last stop on the way to Sarasota was the Pediatric Intensive Care Unit, where a crowd of nurses, doctors, tech and therapists gathered to share goodbyes, hugs and a few tears.

“You’re a miracle baby,” Dr. Perlman told Sammie as she lifted her from her carrier for a cuddle. “When we take care of really sick babies, part of the problem is that we can’t treat them like babies. It’s such a joy to be able to take a baby who was on a ventilator, on IV drips, on dialysis and be able to just treat her like a pretty healthy girl.

“She suffered some significant injury, especially to one of her kidneys. But overall her future looks quite bright. And we’re really excited about what we were all able as a team to do for her.”

“This makes it all worthwhile,” said Dr. Smith as she gave Sammie a hug. “We absolutely love when families stop back at PICU and we can see them walking out the door, because everybody works so hard to make these children better. A lot of times, a family meets just the physician. They don’t realize that there are so many people behind the scenes helping us. It is definitely a team effort.”

It’s a team Samantha’s parents truly appreciate. “I could just go on and on about the special care that we got,” says Cindi. “We wouldn’t have Samantha if All Children’s wasn’t’ there.”