May Aldrin's Kawasaki Disease Story!

May Aldrin's Kawasaki Disease Story!
This is the tragic story of May! Hi,I'm not the parent of the KD child. I'm the aunt. My niece dealt with Kawasaki Disease for the greater portion of 2008, with her life coming to an end in November. I've been vocal about KD and fundraising both in her life and death because I love her and miss her very much, she was a great part of my life. May's story is posted all over - on the kdfund. org website, as well as on numerous other forums - please feel free to copy and paste from there if you wish. Bless you for your help and I hope we make a difference.Kate Hannigan
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.