MaddieMaddie’s Story

Madeline Grace was born Sept. 21,2015 8lbs 2oz 21inches. A normal healthy baby girl until February 20,2016 when Maddie was diagnosed with the flu and our medical journey started.

After two months of not knowing what was wrong with my daughter the doctors performed a lung biopsy along with a feeding tube, and placement of a central line on April 4th,2016. A few days later Maddie was diagnosed with pnemocystic jeroveci pneumonia.

While treating the pneumonia that it was discovered that Maddie had a very rare blood disease called ORAI1 and Severe combined immunodeficiency, SCID (also known as “boy in a bubble” disease) which can cause muscular dystrophy and doesn’t allow Maddie to regulate her own body temperature among many other symptoms. In July 2016, Maddie had a bone marrow transplant to repair her immune system. During this time she has had 6 surgeries, Including one surgery to remove a deadly fungus off of her right forearm.

Only 6 other people have this disease. In those 6 only 2 have survived. My daughter continues to beat the odds, she is my miracle baby!

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