Mom Shares Son's Miracle With Isolating Disease

Aplastic Anemia is an isolating disease that forces families to separate themselves from the outside world to protect the vulnerable immune systems of loved ones.

It stops the body from producing enough new blood cells, leaving it at a higher risk of infections and uncontrolled bleeding. Great care must be taken to erase any chance of infection or injury that could lead to life-threatening complications.

Jennifer D'Auteuil is an Amherst mother who has undergone this very experience; working tirelessly to ensure that her son Drew recovered from this condition and the complications that gave him a low chance of survival.

Drew D'Auteuil is now experiencing the life of a normal middle school student after three years of vigilant care and overcoming life-threatening challenges. Throughout all of this, his mother found solace through connecting with other parents through the worst of it, while writing about her experiences in an online blog.

And now she wants to share her story and let others know that they are not alone.

Jennifer has written a book on her son’s hard journey toward recovery, and has become an advocate to raise funds and connect others who are going through the same struggles.

“Complete Isolation”

Drew had led the a normal life of a 10-year-old boy prior to June 2009. He went to school, played soccer and hung out with friends, but that all changed when he came home with a strange rash.

Jennifer took her son to the doctor’s office, where a bone marrow biopsy showed that he had Aplastic anemia. The years following this diagnosis changed the family as they adjusted their lives to ensure Drew’s survival.

“We lived in complete isolation for 20 months,” said Jennifer.  “It changed how we cleaned, how we cooked; it changed everything. Anything to reduce the risk of him getting infected or hurt.”

Drew could not attend school, go out with his friends, play sports or do most anything a young boy wanted to do. His mother constantly cleaned the house and was struck with worry day and night for her child.

“We ate off paper plates, cleaned the light switches, banisters, everything,” she said. “I didn’t sleep for months and months. The risk of infection was the worst and it could happen in the middle of the night; I was hovering over his bed just waiting for something.”

Jennifer stayed in the house most of the time to avoid bringing anything into the home, while his siblings made similar lifestyle changes. Drew could only leave the house to visit the doctor, so his family tried to bring the world to him.

The Amherst Middle School set up a Skype video feed in his 5th grade classrooms so Drew could participate through his laptop. Some classes were held outside so he could participate for a short time, since he could not be inside with his peers. A tutor helped him keep up with his homework, as the young student worked to keep up.

Friends emailed Drew and he was occasionally able to spend brief periods of time with them outside. 

Finding a Lifeline

A miracle had seemed an unlikely gift before Drew received a bone marrow transplant. Jennifer needed an outlet for her struggles, her hopes and the many fears she faced each day.

Her husband and family friend set up a blog on CaringBridge, an online resource for familie’s dealing with health conditions, to help Jennifer cope with her son’s illness. The blog entries detailed her son’s struggles and the challenges they faced from day to day. 

“At first I wanted nothing to do with it, it made the truth hit home,” said Jennifer. “But I started posting on it, and with each entry I felt more support and hope. It became therapy for me, like a release.”

Not only did she find comfort in sharing her story through writing, but she was also able to find other families struggling with Aplastic anemia. Jennifer said it started when she found a mother in California who also had a son suffering from the disease, and then they continued to find more and more families. 

They would email on a daily basis and communicate through social networks like Facebook.

“I consider these ladies my lifeline,” said Jennifer. “We supported each other in a way nobody else could, since we all understand what the others are going through.”

Serious Complications

Drew received a bone marrow transplant in late 2009 from a German donor named Steven Manro. The next step was recovery, but that would not be an easy task.

Five months later, he suffered from a very rare and serious complication called idiopathic pneumonia syndrome (IPS), which is a set of is a set of pneumonia-like symptoms, and was followed by Acute respiratory distress syndrome (ARDS).

ARDS is a life-threatening lung condition that prevents enough oxygen from getting to the lungs and into the blood. Drew was at serious risk of not making it through.

“The stats for ARDS are not good,” said Jennifer.

Yet, the young boy managed to pull through these complications, even after dealing with Graft-versus-host disease (GVHD) and kidney complications. Jennifer calls her son’s unlikely recovery a “miracle.”

“He recovered beautifully and unexpectedly,” she said.

Sharing Their Miracle

Drew is now a much healthier 13-year-old who is able to go to school, play lacrosse, perform in theater and do all of the things a boy his age should do. His immune system is back up and running, but he still has challenges ahead.

The worst is over for her son, and Jennifer said she is now switching gears to advocating and promoting to help other families just like hers. One way she is accomplishing this is through a book she has written based on the blog she kept for Drew, called 'Anatomy of a Miracle.'

She began writing the book earlier this year, using the 330 blog posts as a guide for part of the book. Most of the book focuses on her son’s miraculous recovery, and takes a look at the faith and hope that appeared.

“It want it to be more of a manual for families like ours,” said Jennifer. “And this story has a happy ending.”

The book is dedicated to the donor whose bone marrow saved her son’s life, and is currently in the publishing process for a late-summer or early fall release.

Jennifer hopes that the book will help raise awareness of Aplastic anemia and inspire more people to donate to the National Marrow Donor Program. She is working on spreading awareness through local and international foundations, such as the Aplastic Anemida & MDS International Foundation.

On top of her that, Jennifer is also working to further connect families coping with Aplastic anemia through a Facebook page called BAND OF MOTHERS in the fight against Aplastic Anemia. There are about 30 families in the group that can post questions, share stories and help find others to support.

“It is all about connecting these families in a very lonely and isolating illness,” she said. “I was very fortunate to get support from other mothers, but there are still people out there that don’t know about us. I want people to contact me, because we’ve had possibly the worse course you can have with this disease, and come out of it.”

To learn more about bone marrow failure, please visit Aplastic Anemida & MDS International Foundation. You can be the match for somebody in need of marrow through Be The Match. Read more about Jennifer D'Auteuil’s story on her blog and on her Facebook page.