Maya & Christian

Propionic Acidemia

People always say that you never know true love until you become a mother.  I think those people are absolutely correct.  I will never forget the moment when my daughter was placed into my arms for the first time.  When those beautiful brown eyes peered up at me, my life changed forever.   It was Thursday, October 29, 2009 when that little swaddled up bundle of love was wrapped in my arms and overwhelming my heart with joy.  My husband Rob and I brought Maya home from the hospital Sunday and received “the call” Monday.  “The call” for moms of special needs children may actually be a phone call or maybe it is a face to face with the doctor.  Maybe they find out right from the moment of birth, or maybe even before their baby is even born.  For us “the call” will forever be engrained in my memory.

My mom was over helping with the new baby while my husband went to check in on a few things at work.  When I answered my phone, the voice on the other side announced they were from the hospital and calling about Maya’s newborn prescreening.  We already had the all clear, so I was slightly confused.  They proceeded to tell me that Maya had an irregular newborn prescreening and may have a metabolic disorder.  We were instructed to take her straight to the University of Illinois in Chicago tomorrow morning for further testing.  If Maya was lethargic, vomiting, or unresponsive we should bring her straight to the emergency room.  That was “the call” that took my breath away.  Trying to respond to the person on the phone was nearly impossible.  My body fell to the ground while uncontrollable tears poured out.  How could this amazingly perfect little baby possibly have anything wrong with her?  The next thing I remember is my husband helping me to my feet as I tried to explain the call.  I cradled my baby in my arms as my mom, my dad, Rob, and I just stared at her wondering if she was lethargic or sleepy, vomiting or spitting up, and if she was responding properly.  My husband called the pediatrician to see if we could stay at the hospital to play it safe.

The next day I watched a genetic team take blood samples, urine samples, and run a variety of tests on my newborn.  My husband and I sat with a counselor who asked if I drank, smoked, or took drugs during my pregnancy.  He questioned if my husband and I were related, or if there were any complications during my pregnancy.  Dumbfounded at the questions that were being asked, I explained what an ideal pregnancy I had with perfect check ups, and how I followed every pregnancy rule that was ever written.  As I explained this, I questioned what could I have

After hours of tests and waiting, we left with the diagnosis of Propionic Acidemia and were told “not to Google it”.  The first thing I did when we got home was Google it.  I saw words like organic acid disorder, serious health problems, heart abnormalities, seizure, and coma.  When the words “possible death” scrolled across my screen, I closed my computer.

Fortunately for us, the only word from the Google list that applies to Maya is “organic acid disorder”.  Instead of serious health problems, we can say extremely healthy and right on target physically, emotionally, and socially.  Instead of heart abnormalities, we can use the words heart of a gymnast.  Instead of seizure and coma, our world is full of words like singing, dancing, and laughing.   Today Maya is a healthy five year old that attends preschool five days a week, goes to science class and gymnastics through the park district, and loves to boss around her little brother Christian.

Having a sibling for Maya was not the easiest of decisions.  Because Propionic Acidemia is a genetic disorder we needed to do the research.  After extensive genetic testing and mixed answers on the odds of having another child with Propionic Acidemia, we decided to go with the route of adoption.  After a failed adoption, we took our chances and had Christian.  Just when I thought my heart could not possibly have room for any more love, I realize just how much love a heart could truly hold.  Christian is a handsome, energetic, soon to be two year old.  He also has Propionic Acidemia.  We were much more prepared for the birth of Christian and the possibility of him also having Propionic Acidemia.  We had a crisis management team in place during the birth and knew within 48 hours our diagnosis.

Both Maya and Christian take specialized formulas and medications.  They both receive services through early interventions, and they both have a lot of doctor’s appointments.  Blood draws are horrendous and doctor’s appointments can be difficult, but none of this defines them.  They are loving, caring, energetic bundles of joy with hearts of gold.  They respect others, accept everyone, and love unconditionally.  Like every other little one, they both have curious and inquisitive personalities.

This inquisitive nature combined with my children’s condition is what inspired Someone Special: Uniquely Personalized Books.  Kids are curious by nature.  They naturally accept everyone’s uniqueness and embrace differences, but they also question it.  Because Maya’s condition revolves around her inability to process proteins, common five year old questions from her peers are as simple, “Why can’t Maya eat the pizza?  Why does she have to drink that baby formula?  Why is she taking medicine; is she sick?”  None of these questions are meant to be harmful.  They are just curious kids.  Children with other disabilities may be faced with different questions such as, “Why is she in a wheelchair?  How come he doesn’t talk?  Why does she need those crutches?  How come he acts like that?  What are those headphones for?”

To assist with the questions that might be asked about my daughter, I created a personalized picture book for her to show her classmates that she is just like everyone else, but she also has this condition.  She likes a lot of the same things as everyone else, but we also need to watch what foods she eats.  When I told my best friend and teaching partner Kate Ryan about Maya’s book, she instantly knew we could help millions of children the same way I helped Maya.  Someone Special: Uniquely Personalized Books was born.

Our plan is to create a personalized children’s book for each and every child with a special need.  There are books out there about special needs that are educational and kid friendly, and also personalized children’s books. However, this unique book will not only personalize the child’s name and birth date, but will also include their hobbies, interests, condition and some recommendations that are all personalized by the parent.  The parent is also able to choose from a series of illustrations and include a personal photo of their child.  The final page of the book is left blank as an open canvas for the parent to include any additional information.

We are still in search of a printer that will be able to print these books at a cost that is affordable to parents.  We are hoping to begin printing before the next school year begins in August so that each child can go to school on the first day with their personalized book in hand and a smile on their face.

For updated information on books please visit Someone Special Uniquely Personalized Books Facebook page or their website at www.someonespecialbooks.com.  Questions or comments can be emailed to HeatherMcCarthy@SomeoneSpecialBooks.com or KateRyan@Someonespecialbooks.com. 

Heather and Rob
OAK LAWN, IL
HMCCARTHY11@HOTMAIL.COM

​From the Spring 2015 OAA Newsletter