Jaxen age 9 Jaxen is nine years old. Jaxen is so affectionate. He is always hugging me, which I am so grateful for, he makes me feel so loved and appreciated. He has a giant heart and is very empathetic. He is so helpful in caring for his little brother and sister. He is protective and kind. He is funny, smart and very matter of fact. He is fun and has a contagious laugh! He loves fishing, […]
My son James is a happy 3-year-old boy in USA. The day he was born we saw that he had a spot on the back of his head. None of the doctors in his pediatrician’s office knew what it was but when he began to lose weight and fall behind in his milestones I knew something was going on. Two years later, James’ pediatrician referred us to a dermatologist, a neurosurgeon, a plastic surgeon, a […]
Myiles is 4 year’s old, he was born on September 7th 2012; 5lbs 13ounces he was beautiful. When he was 15 months old he was diagnosed with Merosin Deficient Congenital Muscular Dystrophy est: 100 patients have been diagnosed in the U.S AND 1,000 patients have been diagnosed in the U.K. He had a rough start from birth, he had water in his lungs, he was not breathing on his own, he spent 13 day’s In […]
I held my hand against the tiny baby inside my belly while she moved and thought of the past few months. During the 20 week sonogram the technician told me it appeared that there might be a cleft lip & palate, water on the brain, clubbed feet, dilated kidneys and no stomach. The doctor said she wouldn’t live to or past her birth and referred me to another physician. The clubbed feet & water on […]
Rare Disease Day is an international awareness campaign that takes place on the last day of February each year. It is the one day the world comes together to recognize people with rare diseases with the goal to raise awareness among the general public and decision-makers about rare diseases. Why do rare diseases need an awareness day? As it turns out, rare diseases are not so “rare.” There are approximately 7,000 rare diseases that combined […]
