Brooke L. - Quilt Finished in 2006

Born: July 28, 1994

Illness: Dilated Cardiomyopathy

A Thank you from Brooke's Family!

Written December 15, 2005

We  received  the  quilt  yesterday.  I gave it to Brooke this morning  and  she  was  snuggling  with  it as I left for work.  Thank you so much.

Michelle and Brooke

Brooke L.'s Story

written by mom Michelle

Brooke has always been a very enthusiastic, adventurous child.  She has never been afraid of trying anything new, including things that would be considered scary. Brooke is the kind of child that puts forth 100% energy from the time she gets up until the time she goes to bed (and that’s because I make her go to bed).  My favorite saying when people ask Brooke if she can complete something physically challenging is always the same -“You obviously don’t know Brooke, she will run circles around you”.  Brooke does not give up easily.  Of everything that comprises Brooke, that is the thing I love most about her, is her will to go.  Throughout the years, many ailments have occurred in Brooke’s life but she still tries to maintain her positive happy-go-lucky spirit.

At birth, we were told Brooke was a normal, healthy baby, but within the first few years of life, we knew that wasn’t completely true.  In the first several years of life, Brooke suffered from chronic ear infections.  She had surgery to place tubes in her ears to help relieve the problem.  Prior to this surgery Brooke failed many hearing tests and her speech was developing slowly.  Her slow speech development was attributed to her poor hearing.

Once the surgery took place, Brooke’s speech took off overnight.  However, even after the surgery, she continued to have severe ear infections.  In addition to hearing and speech problems, doctors found a muscular problem with Brooke’s right eye.  She again underwent surgery to correct the muscle.

Brooke maintained her optimistic, happy, active attitude, but she began to suffer from severe migraine headaches in 1999 at the age of five.  The headaches were so bad, Brooke would literally beg for medicine.  Several times my mother had picked Brooke up from the school bus stop and Brooke would get off the bus crying in pain from her aching head.  The only medication we gave her was Tylenol and it seemed to work, although Brooke only wanted to lay in bed with the lights out.  In this same time period, Brooke began wheezing quite often and she was diagnosed with Asthma, which required her to use an inhaler.  Moreover, she developed a lazy left eye, which requires her to wear a patch over her right eye to force the left eye to work harder to try and correct the problem.

In August 2000, I picked Brooke up from the baby-sitter’s house and noticed that the right side of her face was drooping.  I panicked.  I had no one to go to.  My parents were out of town, everyone I knew was at work, and I had our dog in the car with us, making me unable to drive immediately to the emergency room (the temperature was in the 90s).  I drove home and her face seemed to be returning back to normal but she was very sluggish and tired.  I let her sleep for a while and when she woke up, her energy was back to normal.  Baffled as to what happened, I took her to the doctor.

Once at the doctor’s, I explained what had happened.  I mentioned a possibility of a minor stroke.  The doctor laughed at me.  I insisted that he refer me to a neurologist for her headaches, thinking maybe this was result of her migraines.  We went to see a pediatric neurologist and she ran several tests on Brooke.  No problems were discovered.  After months of testing and no problematic indications, she encouraged me to have Brooke see a cardiologist to rule out her heart.

Brooke went to see a cardiologist where he detected a heart murmur and wanted to see her every two years to keep an eye on it.  Fortunately, she was still able to remain active in physical activities and became very involved in soccer.

When I noticed Brooke becoming short of breath, I attributed it to her asthma.  However, in October 2003 a routine checkup with the cardiologist revealed that this was not the case.  The eco-cardiogram indicated that Brooke was suffering from Dilated Cardiomyopathy.  Dilated Cardiomyopathy is an enlarged heart disorder.  Brooke’s lower left chamber is enlarged and not pumping blood sufficiently to her body.  She is on medication to help strengthen the heartbeat and also a blood pressure medicine to help open all the arteries so the blood flows easier.  Soon, she will start taking a diuretic to help prevent congestive heart failure.  Brooke will be facing a heart transplant if her body stops responding to the medication.

Due to her heart condition, Brooke was immediately pulled from competitive sports and gym class.  Her cardiologist explained that this is the reason that kids drop dead in the middle of sports without any warning...

Our lifestyle changed over night.  Low salt diets, heart medication on a daily basis, and no excessive exercise.  Devastated at what this meant, I knew how serious it was.  Brooke’s father almost died three years prior to the same heart condition.

At the appointment after the diagnosis, the tests showed that her condition had worsened in one month.  Within one month after the bad news I had an appointment at the University of Michigan for a second opinion.  Sadly, the results were the same, but the staff was outstanding.  Their supportive and upbeat attitudes made us realize that this was not the end of the world.  They allowed us to walk out of the devastating appointment 2 days before Christmas with smiles on our faces.

In addition to all of the trying medical problems Brooke has been through in her short decade of life, she also has experienced academic problems.  In the fall of 2002, Brooke was failing most of her subjects.  In January of 2003 Brooke was diagnosed with Attention Deficit Hyper Activity Disorder.  She was prescribed Concerta and her grades immediately started coming up.

Unfortunately, Brooke’s self-confidence has suffered a blow from all of her illnesses.  Luckily, her friends have been supportive when she has had to wear a heart monitor to school.  Instead of making fun of Brooke’s monitor that blatantly showed through her clothes, her friends made her feel like she was special.

What people should know about Brooke’s condition and how it affects their lives is that the doctor’s suspect that Brooke’s condition began because she caught a common cold virus, which attacked her heart.  This was the conclusion after countless 13 viles of blood, testing everything imaginable, were unable to pinpoint a cause.  This could potentially happen to any one of us when we catch a cold.

Brooke has adjusted to her new lifestyle.  Although, she is very disappointed that she is no longer allowed to ride the BIG roller coasters at Cedar Point or play sports, she has accepted this lifestyle and is determined to find the best in it.

Written by Brooke's mom Michelle in July 2004