Diagnosed at 7 months of age and a bone marrow transplant at 10 months. She endured massive amounts of chemo therapy, more blood products than I can count and a very scary stay in PICU and did it all with a smile. She has since not only made, but supassed all the goals and expectations of her therapists.
Favorite Hobbies:
Her new favorite thing is dancing. She loves to shake her stuff when she hears any type of music being played. She loves playing with her brother and sister and absolutley loves Dora.
Proudest Accomplishment:
Every accomplishment is cause for celebration, but her latest and greatest is walking. Not an easy task when just 4 months previous she wasn't even rolling over.
MPS Heroes:
Dr Herman Shafer who diagnosed her. He didn't dismiss her symptoms like previous doctors had. He also diagnosed another MPS-I hurler child a month bfore Teagan. The only 2 cases he has seen in 30 years of practice.
Her brother, Riley and sister, Bailey who both came back as perfect matches for a bone marrow transplant. Riley was chosen to be her life saving donor.
Dr Javier Gelvez who cared for her in PICU with a pulmonary bleed. He pulled her through what we know as the worst night of our lives.
Words of Wisdom:
"Courage is not the absence of fear, but rather the judgment that something else is more important than fear."
Ambrose Redmoon, American writer
Personal Diagnosis Experience:
Teagan was born in Japan with what was thought to be TTN. She had trouble breathing and required oxygen and antibiotics. She has always had very rasping, heavy breathing that were very apparent. We had to constantly use the bulb syringe on her. She also had a small patch of hair on her lower back at birth, her limbs were very stiff and she never passed a newborn screening hearing test. We always thought her eyes and fingers were a little different and she had an outtie belly button that was different from the rest of the family. The doctors all reassured us that she was fine, even after numerous visits to the office because of our concern about her breathing. We moved back to the States and Teagan got an ear infection. We saw a doctor that listened to our concerns and followed through with more tests. He Xray'd her back where the hair had now turned into a bump. He knew right away.... She had Hurler Syndrome. Oddly enough he had diagnosed a little girl a month prior with the same disorder. What a blow it felt like to hear those words. Teagan underwent removal of her adenoids and tonsils, had tubes in her ears and finally received a bone marrow transplant from her 4 year old brother at the age of 10 months.We are thankful that we have the option of a treatment, so in that case we do feel very fortunate.
