Zoey Montie's Story

Saturday, November 1, 2008 we first noticed our 2yr. old daughter, Zoey had two red spots right below her lips. We didn't think anything of it because we thought it was mosquito bites being we live in south Louisiana. On Sunday November 2nd we noticed they were bigger and two more appeared on her cheeks. On the 3rd we called our family physician and made an appointment. She was diagnosed with Impetigo and was given a cream. The next morning around 3 she broke out in a sunburn like rash from her neck to her collarbone which we thought was an allergic reaction to the cream. We brought her back in and they gave her a steroid shot thinking it was strep. By the time we got home (about 30 miles away) her eyes, lips, hands, and feet were swollen. The rash also spread down to her feet. We brought her to the emergency room where a doctor gave her another steroid shot and said if the condition gets worse before the weekend bring her back. The next day we went back to the doctors office not knowing what to do. From there they sent us back to the E.R. where a doctor mentioned Kawasaki Disease but thought it was too serious to scare us with it. He transferred us to another Hospital where they questioned us about several things and wanted us to make an appointment with a Pediatrician the next morning. We went saw her pediatrician. We never mentioned the disease. She examined her and said she thought it was Kawasaki. She also said if the rash got any worse she would send her to a burn center, luckily that did not happen. The pediatrician then admitted her into the hospital. The first thing they did was run blood tests to rule out measles, rubella, scarlet fever, and so on. (a very long list of things). They then told us they were going to give her an I.V. of Gamma Gloubin. They said if this treatment works it is for sure Kawasaki. Within a 12 hr. period her skin started to improve from the rash and started to peel as a sunburn does. Zoey was in the hospital for a few days. So... after a few days we went back in for a check-up. There she told us this is a rare disease (19 out of every 100,000 kids) approximately 3,000 - 4,000 U.S. children per year. Usually it affects kids of Asian decent, but has spread to other ethnicities. What she compared it to was "your body has a thousand soldiers to fight off the bad things in your immune system, but children with kawasaki have ten thousand. After the first thousand fight off the bad stuff, the other nine thousand start to attack the rest of your body." (mainly your coronary arteries) Zoey was seeing a cardiologist every two weeks. Her right coronary artery was enlarged, but is now closer back to normal. Zoey has a little bit of fluid around her heart and the inside of her arteries are crusted (sandpaper like). Therefore she was on aspirin daily to prevent blockages which lead to heart attacks and so on. She now sees him every 3 months & only a murmur remains. Every time we go to the cardiologist she shows a little more improvement, but they tell us for sure she will have to see him until she is 8 yrs. old. At 8 she will have to take a stress test. If she passes the stress test we will have to see him less often. If she fails the stress test we will do this pretty much for the rest of her life. Zoey has aslo had 4 surgeries since Febuary 2009 because of 7 hernias, her most recent being on Aug 6th, our question was " what in the world caused a 2yr. old so many hernias?" The surgeon in Houston believes that Kawasaki not only weakend her arteries,but her muscles as well, causing the hernias. The most unusal hernia that has been seen in a person Zoey's age known as a Femoral Hernia. Zoey is a very active child & hasn't let anything stop her from living life to the fullest!

As many other families, we were shocked and in a state of dis-belief but wanted to get more educated on Kawasaki disease. So many people do not know about this disease and we are just trying to make more people aware of it, and maybe even find the cause which is still unknown. All families that had to experience this, especially the children that are suffering from it are in our prayers.

REMEMBERING MAY ALDRIN, A KAWASAKI DISEASE PATIENT WE WILL NEVER FORGET…..

In reviewing the stories and accounts of Kawasaki Disease afflicted families and children, there are many similarities and differences I can draw to my own experience with the disease. My niece, May Aldrin, was 4 years old when she was diagnosed with the disease. Forgive me if I am mistaken in the details, there's a long story involved. May had symptoms not unlike most children - intermittent fever, reddened eye whites, and rashes. She was admitted to Children's Memorial Hospital in Chicago this past March 2008 and her stay lasted almost a month. The initial diagnosis took a while, as there are no tests to indicate KD, they had to rule out all other possibilities - including Cat Scratch Fever. May's family got to know her doctors, her nurses, the 7th floor attendants, researchers - all of the key care practitioners for Kawasaki Disease and Infectious Diseases. She was a questionable case as her reaction to the 3 treatments - IVIG, Steroids, and Remicaid did not prove to make her any better. She was treated twice with each course, only responding positively to the steroids in the long run. The echos taken showed that she had a aneurysm and two moderate enlarged arteries. Not unlike your families, May's family was distraught. Maybe distraught doesn't even describe it well, they were helpless. What in the world had happened, why, and what can be done?

May got out of the hospital in time for her 5th birthday. She had fluctuating levels of inflammation in her blood, a trend that occurred just often enough to keep her parents Eileen and Jason always anxious whether they would have to be back at Children's for another round of sleepless nights. They did their best to take care of her, normalize her life, however never denying her of her new sets of wants and needs. Primarily, May was a little obsessed with Scooby Doo and her Daddy's stories about her kitty, Joseph.

She couldn't get enough. The steroids had a huge effect not only on her looks (weight gain, advanced growth) but also on her daily activities. She was constantly hungry and exhausted - even disinterested in her favorite parks, games, and toys. She was still our May though, and we were all convinced when she was off the steroids things would be better for her.

This past September 20, 2008, we (May's family) worked together to hold a fundraiser benefiting the Kawasaki Disease Fund. May's doctors, nurses, researchers, friends, neighbors, family, classmates, and more all came out to support awareness and research efforts. May even sang on stage with her Daddy by her side.

"Eight Days a Week", by The Beatles - one of her most favorites.

"Play for May" raised almost $15,000 for Children's Memorial. May and her sister Grace got to hand over the really big check to Dr.

Shulman and Dr. Rowley, which May endorsed herself. Since then, May's been a kid again. She started Kindergarten at Bell School with her sister in 2nd grade and her mom as the librarian - all looking after her and seeing her joy in being a student. She went to birthday parties. She learned to ride her bike. She went bowling for the first time. She looked forward to Christmas. She was starting to come off the steroids and look more like the May we remembered from earlier this year. Her echos still showed the moderate enlargements and aneurysm, but no growth or change. Her CRP would fluctuate, but for the most part stay in the normal range.

There are more and more details I could mention. I could tell you all about May as a fun, giggling, helpful, loving, giving, energetic, smart, serious, friendly, devoted, and loved child.

What it was like watching her grow up, forever trying to be like her sister, think like her mother, love like her father, play like her uncles, be girly like her aunts, caring like her grandparents, and mischievous much like her friends. May's story is probably the same as anyone's who has been affected by this disease - in that she handled it better than everyone around her. We are all the people wondering - What in the world has happened, why, and what can be done? She just wanted to be a little girl.

The main difference of May's 9 month fight with Kawasaki Disease is that her battle has ended. She passed away this past November 14,

2008 of what we presume to be a heart attack. She had been raking leaves Monday, went to see High School Musical 3 on Tuesday, visiting her Aunt on Wednesday, in ICU Thursday, and by Friday morning she became past tense. I don't know how to word this to make it seem less horrific. What I can tell you was that her symptoms that brought her into the ER on Wednesday night were related to 3 instances of vomiting, the last time with her mentioning that her heart hurt her. Her parents were skeptical because the occurrences were random and followed by May being hungry and playing again, but with her mention of her heart they aired on the side of cautiousness. Thursday morning the doctors were concerned an event or something had occurred to cause her vomiting, so they decided that an angiogram would be needed to find out what the echos and blood tests weren't telling them. The results came back and they were devastating. The damage done to her heart indicated that she was relying on the unaffected arteries, effectively running on half of her heart. The doctors mentioned two options, a series of bypasses or a heart transplant.

I don't have to explain to you that neither are good options or viable options because of all the variables at hand. She was sedated, given pain medication, and was hooked up to several IVs.

Before the doctors would confer the next morning after having sent May's case out to other hospitals for review - her heart rate sank, doctors did their best to try and get her heart pumping on it's own, and by early morning they ended their efforts.

This was and is a nightmare. Not just for us, not just for May, for her parents, for her friends, for her community, but for you reading this. You, much like every parent who came to her wake or funeral, are scared for your family, your child. You have questions ranging from the practical to the universal. We do too.

May died from a disease of which we have no understanding - this mysterious disease that came into her life and took her. May was so proud to hand over the check to her doctors after the fundraiser. In her passing, she has donated heart tissue to those same doctors to research and learn more about the disease. Her family has asked that in lieu of flowers, donations be made to the Kawasaki Disease Fund. We all continue to support the doctors, the nurses, the researchers, and the KD families. Please reach out to your doctors, your communities, your schools, your churches and do what you can.

THIS STORY WAS SUBMITTED BY MAY’S AUNT, KATE HANNIGAN.

Victor’s Story

On February 16, 2008, we took Victor to the Pediatrician because for the past two days, he was having high fevers and some rashes that we noticed on his body. When we went to the Pediatrician, he looked at him and said that it was just a viral infection that was going around that it would go away with time. So he told us to give him Tylenol for the fever and Benadryl for the rashes. We went home and the next day he got more rashes in his body and the fever would not come down (104.7 – 105.1). So we took him back again to the Pediatrician because the fever was not coming down and it seemed like Victor was getting worse. So on Wednesday, we took him back to the pediatrician and told him that he was not getting any better. So the pediatrician said that he was going to do a test to see if it was strep. The test came back negative for strep. By now Victor had more rashes and now his hands and feet were getting swollen and his eyes were red. The Pediatrician took another test and said that he thought it might be Kawasaki disease but that he was not sure. He called in his colleagues to look at Victor and see what they thought and they couldn’t tell. So the Pediatrician said that he was going to refer us to a specialist at Children’s Hospital to see a friend of his that specialized in Kawasaki disease. So Friday (2/20/09), we went to Children’s hospital and the specialist examined Victor and asked us questions about what had transpire in the last few days. They came back and told us that it was Kawasaki disease. So they admitted Victor at Children’s Hospital the same day. The first thing they did was an echocardiogram and blood test before they started the treatment. The results for both test were normal. Victor was given an IVIG and aspirin for the treatment. Within a day after the treatment Victor started to look really good. The rashes on his body were disappearing, no more redness in his eyes, no more fevers and the swelling of his feet and hands were gone. After 3 days at the hospital we took Victor home, although he was to take 4 aspirins 4 times a day for the next week and after that just one aspirin for the next 6 weeks. A week after being home Victor’s hands started peeling then his feet. Two weeks after being home from the hospital, we took Victor back for another echocardiogram and blood test. The results from those test came back normal. We are just glad that the doctors were able to diagnose the disease right away and were able to give him the treatment. Now Victor is doing well and is a happy little boy.

Brooklyn's Story

On February 2, 2006 our daughter Brooklyn, who was only 14 months old, woke up in the middle of the night with a high fever of 105. The next morning I noticed a rash on her entire back and took her right to the doctor. I was told it was a “virus” and the rash was from the high fever. The rash disappeared, but her fever persisted and I started to notice other symptoms, her eyes were really bloodshot, but more like the whites of her eyes were almost red, and her lips were really red and started to bleed. She was also very weak and couldn’t even stand on her own. I found this odd and was really concerned because her fever kept reaching 105, it seemed hard to get it below 101, even with Motrin. I brought her back to the doctor two more times since the initial visit and insisted on a blood test. Both times she was diagnosed and treated for a kidney infection. Finally, on the 6^th day (after having no improvement from the antibiotics prescribed for the kidney infection), our pediatrician mentioned the name Kawasaki Disease and thought we should maybe see an Infectious Disease doctor. That night I Googled Kawasaki Disease and remember walking down the hallway to find my husband and tell him Brooklyn for sure had this. She had so many of the symptoms and even though I had never heard of this disease before, I knew it had to be what she had. The next morning we went to the infectious disease doctor and he was convinced it was Kawasaki Disease so he ordered her to be admitted to the hospital and to be given an IVIG transfusion first thing in the morning. This would now be the 8^th day and after reading about the disease I was panicking knowing it had to be treated within 10 days! However, because there is not a test for Kawasaki Disease, the Doctor had to rule out all other infectious diseases first, so Brooklyn had to undergo several tests, including a spinal tap. All the tests came back negative and Brooklyn was treated with the IVIG. We immediately saw an improvement, her fever went away and she started to “come back to life”. Although she had a relapse after we came home from the hospital, and she showed an aneurism on her coronary artery several weeks later, I am happy to say Brooklyn is completely healed and has a healthy heart. She was left with a heart murmur, but we are told it is nothing to worry about. She is a healthy and beautiful 2 ½ year old.

I am nervous about the damage that was done to her heart and what will happen when she is older. Will she be prone to heart disease? And, why/how the heck did she get this in the first place? My husband and I really wanted to make a contribution to Kawasaki Disease Fund and get involved some how. Friends and family wanted to help in any way they could too, so we decided to through our own little fundraiser on behalf of Brooklyn. This summer, on August 25^th, we invited our closest friends and family to a party at our house and called it the “Summer Groove”. We held a silent auction, 50/50 raffle and were able to raise over $2500.00 for the Kawasaki Disease Fund at Children’s Memorial Hospital. We hope to have this event every year so we can continue to contribute and find answers to what the future holds for Brooklyn and all the other children affected by this disease.

Rapid diagnosis helps Morgan recover from Kawasaki Disease

For any parent, determining whether your infant is sick with a routine virus, or something more serious, can be challenging. Doctors advise parents to follow their instincts and to err on the side of caution. Monica and Drew learned firsthand the importance of following parental instincts during a frightening 10-day health crisis involving their 9-month-old daughter, Morgan.

The family was vacationing in Florida when Morgan came down with flu-like symptoms – fever, lethargy, lack of appetite and difficulty sleeping. Her parents sought advice from their pediatrician back home in Chicago. Based on the symptoms they described over the phone, their doctor thought Morgan had a virus and would examine her when they returned home.

Just before the family's flight home, Morgan's fever skyrocketed to an alarming 104.7 degrees. Her parents debated whether they should get on the plane or stay in Florida, but decided that returning to Chicago was the best thing to do. Little did they know how important that decision would be to their daughter's life-long health.

Back in Chicago, the family's doctor diagnosed Morgan with a virus and prescribed a basic pain reliever. Days passed and still Morgan's fever remained dangerously high. Monica and Drew knew something was wrong. They took her to several doctors in search of answers and relief for Morgan. After eight long days of watching their daughter suffer, they were at the end of their rope. “We refused to wait any longer and demanded that Morgan be seen that day by the experts at Children's Memorial Hospital. Thank goodness we did, because we later learned we did not have a day to spare,” says Monica.

Kawasaki disease is the most common cause of acquired heart disease in children in developed nations, is a relatively new disease

The parents, who never dreamed they would enter a children's hospital, found themselves walking through the doors of Children's Memorial desperately seeking answers. They met with Stanford Shulman, MD, head of the hospital's Division of Infectious Diseases and its Kawasaki disease program. Shulman examined Morgan and noted a faint rash, slight puffiness and bright red “strawberry” tongue. He told Drew and Monica that he suspected Kawasaki disease and ordered blood work to confirm it.

“Our first reaction was, ‘Kawasaki disease? As in the motorcycle?” says Monica. “We had never even heard of it.” Shulman, who is considered one of the top American experts on Kawasaki disease, explained that it is an illness that causes inflammation of the blood vessels and can cause damage to coronary arteries. If not treated within 10 days of symptoms, a child runs a greater risk of long-term heart complications.

Because Morgan had been exhibiting symptoms for at least eight days, Shulman arranged for Morgan to begin treatment the next day. Treatment of Kawasaki disease requires hospitalization and involves an intravenous immunoglobulin (IVIG), a medicine Monica calls “an IV of super blood,” along with a dosage of aspirin to reduce inflammation.

Monica and Drew had never heard of Kawasaki disease when they first learned of their child's diagnosis.

Because Morgan was not showing all of the symptoms of Kawasaki disease, such as peeling skin and blood-shot eyes, the Gosses asked if the IVIG treatment would harm her if it turned out that she did not have the disease. Shulman, who is also a Professor of Pediatrics at Northwestern University's Feinberg School of Medicine, assured them that there was no risk of harm and that if she did have Kawasaki disease, the IVIG treatment would reduce her fever almost immediately and she would feel better within 24 hours.

The treatment plan worked. Just as Shulman predicted, Morgan showed immediate signs of improvement and was able to return home a couple of days later. Morgan's follow-up therapy included a half an aspirin a day for six months, and an echocardiogram at six months and one year to monitor for any heart damage.

The parents speak highly of the staff at Children's Memorial, especially Shulman and nurse Nancy Innocentini. “The staff is truly phenomenal, always going above and beyond to educate, assist and comfort us,” says Monica. “I believed them when they told me Morgan was going to be okay because they were so knowledgeable and able to answer all of our questions. And I will never forget their kindness and compassion.”

Today Morgan is a healthy, energetic 4-year-old who is free of Kawasaki disease. She enjoys pre-school, arts and crafts, swimming and chasing after her 2-year-old brother, Tristen. Her mother says Morgan is outspoken and opinionated, especially about what she wants to wear. She loves to dance, especially to the rhythms of reggae music, and to lead group sing-a-longs with her singing machine.

“The staff is truly phenomenal, always going above and beyond to educate, assist and comfort us,” says Morgan's mother, Monica.

Kawasaki disease, the most common cause of acquired heart disease in children in developed nations, is a relatively new disease, first identified in 1967 by Dr. Tomisaku Kawasaki of Japan. As a result, the long-term effects are largely unknown. “In the back of my mind, I worry about how Kawasaki disease may affect Morgan in the future,” says Monica. “Continued funding for research is critical to understanding the long-term effects and discovering the cause of this disease.”

Monica and Drew, ever grateful for the expert care their daughter received at Children's Memorial, are committed to helping other families affected by Kawasaki disease. In 2005, they founded the Kawasaki Disease Fund (KDF) to advocate for research funding and greater awareness of the disease.