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.