My name is Megan and I'm a Sixteen years old. In 2007 I was diagnosed with Cardiomyopathy. I am currently at Primary Childrens Medical Center waiting for a heart transplant. I will be here until I recieve my new heart!!! But know I just got my New HEART on September, 2 Tuesday 2008. And know I'am home and It's pretty hard liveing life after a Heart Transplant. If you would like to make a...
I'm a mother of two who recently lost our first child, Charlotte, to a rare chromosomal issue that resulted in various health issues and complications. She was 3 years and eight months old. With her we dealt with developmental issues as well as heart, lung, kidney, and feeding issues. She used oxygen and a feeding tube for most of her life.
Ella, my second child, is not affected by this disease...
I have 2 sons, our second son is a child with special needs who was diagnosed with Cerebellar Hypoplasia, Microcephaly, Cerebral Palsy and Failure to Thrive. He had a bard feeding tube put in at 15 months and later we switched it to a mickey.
Our mission is to create a virtual village to raise our special needs children. We will discover, compile and share new possibilities that...
My personal blog, http://www.cureforkayla.com, is dedicated to my daughter Kayla Vittek who was born with congenital myotonic dystrophy. Myotonic dystrophy, aka: myotonic muscular dystrophy, is the most common form of muscular dystrophy and affects 1:8000 people worldwide. It is a degenerative multisystemic disorder that affects most body systems including the heart, lungs, vision, smooth and...
Our son, Simon Lev , became suddenly ill when he was 4 months old and was diagnosed with Heart Failure due to a disease called Cardiomyopathy. We spent 4 months in the ICU with him and endured MANY ups and downs since that fateful day. Since August 1, 2008, we have faced a decision about a heart transplant, an ER visit for each of us, a gall bladder surgery, a forced quitting of a job and loads...
My name is Adam Freeman and I am the proud father of Kayleigh Freeman who was born at 28 weeks, but was diagnosed early on with severe IUGR (Intrauterine Growth Restriction) and was delieverd via emergency c-section (due to preeclampsia) the size of a 22 week old little girl. She weighed an amazing 1 pound - 1 ounce and defied all the odds against her to survive through the pregnancy and after...
I'm the father of Caden Gabriel Osborne (pictured). Caden born with 22q11.2 on 11/2/04 has endured numerous complications associated with a 22q11.2 chromosome deletion. His primary diagnosis is also called VCFS (Velo-Cardio-Facial Syndrome) or DiGeorge Syndrome. Caden's complications have included multiple heart defects, scoliosis, feeding difficulties, hypocalcemia, immune deficiencies, and...
I suffered with Crohns Disease for 30 years and after 20 ops I ended up with intestinal failure. I recently became the 11th person to have a small bowel transplant, at Churchill Hospital in Oxford. Post transplant I am learning to eat again and am on a feeding regime that goes via a tube directly in to my new bowel. I inject myself 6 times a day with anti sickness drugs. Having the...
Hi, I was diagnosed with COPD/Asthma 6 years ago. I had smoked 2.5 packs per day for 30 years and quit 3 days prior to diagnosis.I was recently released from a week in the hospital with double pneumonia (my first exacerbation). I have been using Advair and Albuterol inhalers for a few years and thought that was as good as it was going to get, but struggled constantly to breathe and perform...
Carter was born on March 27, 2009. We were surprised to learn that he had a cleft lip/palate and was missing his right outer ear. Our little guy was whisked away to the NICU with breathing difficulties. A few days later he was transferred to the children's hospital which is one hour away. He spent the next 10 weeks there. During that time he was diagnosed with a Chromosomal disorder which...
