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.

by May’s aunt, Kate Hannigan

. Morgan Goss 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 9-year-old who is free of Kawasaki disease. She enjoys school, basketball, swimming and chasing after her 7-year-old brother, Tristen.
“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.


. Nicholas Reyes
Our first encouter with Kawasaki Dse started on March 2006 when my son who was 4 yrs old then started having high grade fever 103-105 not relieved by Motrin and Tylenol. Took him to the doctor and was diagnosed with Strep throat and treated with oral antibiotic but didn't help took him back the next day and same thing. Until we brought him to the ER and they did a CT scan of the neck because his neck nodes are swollen and he had history of surgery in his left neck due to swollen nodes. My son is allergic to Sea foods and after the CT he started to have red palm, swollen lips and red eyes - we thought it was an allergic reaction so he was admitted to the hosp. The next day a lady doctor saw him and told us that she thinks it was most likely KAWASAKI but she can't confirm it for there is no test. We were transferred to Children's Hospital of Milwaukee, Wisconsin. There he was treated for KD with IVIG which at first brought his BP down and ended up getting it slower than usual. He was at the hosp for almost a week and can't walk due to weakness when we got home. Six months after, he had the same high fever and was positive for strep throat but antibiotic did not work, so took him back to ER and luckily it was the same lady doctor who saw him that first time and decided to transfer us back to CHW and he was treated for KD again.

by Neil Reyes (father)

Juillia Reyes Last year (2009) our then 14 months old girl developed high grade fever not relieved by Tylenol and Motrin, took her to ER 3 times including that one time she had Seizure due to high fever but everytime we were told there is nothing and that it can just be viral and to wait, eventhough we had been emphasizing to them our son's history. But with our experience with our son, I had the feeling that it is KAWASAKI. On the 4th day of her fever we took her back to the Pedia and convinced her that it was KD, so she transferred us to CHW and there she was treated for KD. It was just frustrating at some point that the ER doctor did not listen to us. Honestly, I think we can say that with our encounter with KD - we can be experts. Just Kidding! But the doctor in CHW told us that it has been a rare incidence what happened to our kids. Thankfully both our kids are doing well and healthy. Both of them have completed their frequent follow-ups and ECHO.

by Neil Reyes (father)