Meet Madelyn M. (or as we all know her, Maddie). Maddie is a very vibrant, caring and brave two-and-a-half year old girl who was diagnosed with a severe form of aplastic anemia at the precious age of 15 months. Aplastic anemia is a condition that occurs when the body stops producing enough new blood cells.
Maddie was a healthy child until she came down with the flu. A few weeks later, Maddie’s mom, Serenity, started noticing bruising on her body. Maddie was admitted to the University of Michigan C.S. Mott Children’s Hospital in December 2010, which is when she received the diagnosis.
The past year has been challenging for this family, to say the least. Serenity has had to very carefully choose how Maddie can spend her time outside of the house in order to avoid putting her in contact with germs that could worsen her health.
Even though this has been a very difficult year, according to Serenity, there have been many breaks in the clouds thanks to Jessica Carty Chapman, patient services coordinator at Children’s Leukemia Foundation of Michigan. The UofM social services team connected Serenity and her family with us during Maddie’s first hospital visit when she was diagnosed. Serenity recounts why she decided to register with CLF.
“It’s a Michigan-based program, and considering our current economic times, I wanted to keep things here in our state,” said Serenity. “It seemed like a small enough organization that we would receive one-on-one support and resources.”
We need to backtrack for a minute to tell you about Jessica. Jessica just celebrated 10 years as a leukemia survivor. She was diagnosed at 16 and went through grueling chemotherapy treatments that left her without her hair or her spirit. Jessica and her family came to CLF for financial and moral support. Jessica showed us her utmost gratitude by joining our team as a social worker. She’s a Godsend to many families we support because she truly understands what they are going through.
Back to Maddie’s story…
A Shoulder to Lean On
Serenity says the consistent support, concern and resources (both for family outings and financial hardships) she has received from Jessica and CLF have been extremely helpful. In this case, they went from two incomes to one in the past year because Serenity practically lived at the hospital with Maddie.
“Jessica is the most amazing person we could ever imagine having the chance to work with,” said Serenity. “Jessica would call every month to ask how we were doing, and she would call the minute funds were available for things like gas. You can’t say that for every organization. Jessica was also very resourceful. If she didn’t have an answer right away, she found it.”
Since Maddie was forced to stay indoors for most of the past year, the first CLF event Serenity and her family were able to attend recently was CLF’s holiday party in December 2011. Serenity recalls this was the first opportunity they had to take a family photo where they were all dressed up and Maddie didn’t have bruises on her face or limbs. All pictures from the past year were taken at the hospital, and it was never the three of them together. This event made the holidays even more special for this family.
Looking Forward to the Future
Now that we’re well into 2012, how’s Maddie doing? Serenity is happy to share that Maddie is doing well and can now fight off infections. The doctors have begun a slow taper of her medicine, and her hemoglobin levels are looking good.
To add to that positive news, Maddie became a proud big sister when her brother, Owen, was born on February 9. Serenity discovered a program through Cord Blood Registry that allowed her to store Owen’s cord blood for a minimal charge in case Maddie needs it during the next five years. Serenity felt it was very important to share this so others in a similar situation know this option exists.
Serenity also wants the entire world to know that for being diagnosed with a very serious disorder at an early age, Maddie is by far the bravest person she knows. In spite of bone marrow biopsies, several pokes, transfusions of blood and platelets, many achy days and taking horrible tasting medicine, Maddie continues to act her age and shows no signs of developmental challenges. She is beyond her age in intelligence, she’s independent and she’s a very caring little girl who amazes her parents every day.
When Serenity and her family can finally put this experience behind them, Serenity fully intends to give back. She has family in the restaurant industry and hopes to provide meals and outings to other families experiencing similar situations.
Serenity also has advice for families experiencing something similar:
“Reach out, don’t stand alone, ask for help, swallow your pride and get educated. Learn exactly what’s going on with whoever received the diagnosis, and find out what resources are available to get you through this.”
We’d love your feedback on this story, and all others in the future! Share your comments and any words of encouragement for Maddie and her family below.