Maggie Hope



In 2007, after deciding they were done having children, Lissette and Stephen discovered they were pregnant with their fourth baby. At 17 weeks pregnant, the family was told some very devastating news about their baby girl. Her brain, heart, and kidneys were not forming properly. Throughout the pregnancy, the news got worse and the idea of hope was not a philosophy shared by the medical community when relaying her prognosis. Over and over the family was told not to hope for much. Born May 13, 2008, Maggie Hope was immediately labeled as "incompatible with life" and “never expected to thrive."

Soon after she was born, Maggie was diagnosed with a rare genetic disorder called Mosaic Trisomy 8 Syndrome. A person with this syndrome has three complete copies (rather than the typical two) of chromosome 8 in most his or her cells. This condition results in a variety of severe mental and physical obstacles. In Maggie's case, it caused developmental delays amongst other things. From the day she was born, she has been attached to a variety of devices: apnea monitor, feeding tube, cranial band, back and leg braces, walker, wheelchair and many more.

Maggie has agenesis of the corpus callosum, which means the one hundred million nerve fibers connecting the right and left hemisphere of her brain never formed. This is the cause of Maggie’s learning and physical developmental delays. Born tongue-tied, she was diagnosed as being non-verbal. She has learned sign language and can sign over seventy words. Additionally, she uses a communication device to speak and amazingly can now verbalize "Mommy," "Daddy," and "Eat"!

While in utero, Maggie's Cardiologist and Urologist predicted she would need immediate open-heart surgery to repair her bicuspid valve causing aortic stenosis and correct her kidney reflux. Although the kidney surgery was completed, miraculously her heart surgery got postponed. Then six-month check-ups evolved into annual visits and eventually into an appointment every three years! As her cardiologist states, Maggie is a walking miracle.

Maggie was assisted by the Foundation for Blind Children for the first three years of her life. They were instrumental in helping to strengthen her weak optic muscles caused by Duane Syndrome. This syndrome along with Cortical Visual Impairment have caused Maggie to wear glasses since she was one year old.

Due to Maggie's scoliosis, various skeletal deformities, low muscle tone, and developmental delay, Doctors said that IF Maggie ever walked; it would not be until much later in her life. Once again, she surpassed their expectations and began walking around 3 and half years old! At the age of four, Maggie received bilateral surgery to reconstruct her feet. This kept Maggie in casts but never slowed her down. The surgery is a temporary success as additional foot surgery may be in her future. Not only does she walk, she LOVES to dance! Anything with a funky beat will get her moving! Maggie has an upcoming surgery, Spring 2015, to lengthen muscles in her arms allowing her to have full range of motion.

Because of severe GI reflux, Maggie refused to eat and was diagnosed Failure to Thrive when she was one year old. Eating was a painful experience for her, and she became resistant to anything around her mouth, throwing up at the sight of food. She had a GI tube placed in her stomach and was tube fed for over three years. Slowly and with a lot of tears, Maggie regained interest and one day ripped out her tube. Today, we cannot keep enough food in front of her. She loves to eat! Although the feeding issue has resolved, Maggie still suffers from severe constipation and takes daily medication to help her process her food. Upcoming tests are in her near future to verify there is no internal blockage.

Maggie's progress has surpassed her Doctor's expectations and despite the snowball effects of her genetic disorder, she continues to defy the odds and brings joy and delight to everyone she encounters. Maggie's life is a magnificently beautiful display of strength and perseverance along with a perfect reflection of her name, HOPE.

Fun Facts:

Favorite cupcake flavor?

Chocolate

Favorite beverage?

Milk

Favorite food?

Pizza or Spaghetti