Maddie was my first child and I had a very normal pregnancy with her. Born May 26, 2009. We really didn't expect any issues until she was 22 months old other than she was a good sleeper! I took her into the ER on a hunch and here she had a hemoglobin of 2.4! For 5 months she was hospitalized for several things including blood transfusions, lactic acidosis and low blood sugar yet we still had not received a diagnosis. August 16, 2011 I received a call saying that her bone marrow had come back from Baylor confirming Pearson's Syndrome. The next 3 years were very hard with the unknowns, adjustments, blood transfusion and hospital trips. Though after time we adjusted to our 'new normal.'
We are now a family of 5 living in western Pennsylvania in a small city called Parker. Madelyn is now 7 years old, and has 2 sisters (Gillian age 6 and Daphne age 10 months). Maddie no longer needs blood transfusions and only needs hospitalization if she gets a virus or cold bug she can not fight on her own. Her current care includes Type 1 Diabetes, Poikioloderma (sensitivity to the sun), and at times low energy. On most days a passerby may not even expect she has such a horrible diagnosis. She is a quiet, silly, beautiful little girl who has also been such a strong fighter. Her struggles have brought our family closer and graced us with a community willing to step up when we are in need.
Maddie continues to have time periods of struggle but we deal with the problems at hand and get her the aid she needs. Her specialists who help us keep an eye on her growth, body and needs are genetics, endocrinology, neurology, dermatology, cardiology, audiology, ophthalmology, hematology, nephrology, a Diagnostic Referral Team and a nutritionist/chiropractor. We enjoy what we have and try to leave the fears and scares aside. When she smiles we have no reason not to smile with her.