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My husband and I are blessed with two amazing girls. Like all new parents, we were thrilled when we found out we were expecting our first daughter. Addelyn joined our family in 2009, and she was beautiful.

At birth, she inhaled meconium and was taken away from me with breathing problems. She was transferred to a different hospital than the one in which we delivered. I remember being heart-broken and feeling helpless; I only got to hold her for a few seconds before she was transferred. Her dad was right by her side the entire time, already showing us how great of a father he would be. We spent six days in the hospital as she learned to breathe and eat on her own. We took our baby girl home and began our journey as a family, expecting that our trauma was over.

It wasn’t until she became ill at seven months with a respiratory infection that the doctors began to raise concern about her development and low muscle tone. It was at this moment that we realized our lives will be changed forever. Blood work, tests, physiotherapy, and treatment programs were now going to be a daily part of our lives. Addelyn is now an active and bright four-year-old. She has started to walk this year and continues to show us that she is not stopping but moving forward. We are so proud, and we admire her strength.

Optimistic and hopeful, we decided to have another child. We were reassured from the doctors that it was less than a one-per-cent chance our next child would have any medical issues. In July of 2011, our baby girl was born five weeks early at three pounds, 11 ounces. We spent 33 days in the NICU where they discovered she had two holes in her heart. After 10 months, the medical team decided that one of the holes in her heart needed to be repaired because she was not growing or developing. In May of 2012, Claire had open-heart surgery. In the summer of 2013 she had an MRI, which showed that she has a tethered spine and severe scoliosis. This is the point that we officially became part of the neurosurgery family.

Claire is being watched and monitored and will need multiple surgeries – including spine surgery – in her future. We know we have struggles and a lot of work ahead of us but she is our angel and we will do whatever it takes to make sure she is moving forward. She shows us every day that she is determined, hardworking and stubborn.

Both girls had genetic tests done and they both have a rare chromosome imbalance. We do not have a true diagnosis and are unsure of what the future holds for them. We are certain, however, that we love them unconditionally. With the help of therapies and specialists we are certain we will be sending our girls in the right direction to succeed.

As a parent of undiagnosed children, it is hard to move forward not having any answers and it is challenging to know where you belong or what direction to go. Trust that your child will show you and lead you in the direction you need to go. You will be surprised at the obstacles you will face and you will always find the strength to keep going. Always trust your gut as it will never lead you astray; there may be times when you have to disagree with a situation, but know that it is OK to stand up for what you believe in, and get educated on the decision you must face.

People say to me all the time, “I could never do what you do.” I always look at them and say, “Yes you could, it’s that simple. Yes you could, yes you would and yes you can!” My children are my heroes and inspiration.


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