“Maggie’s life is a magnificently, beautiful display of strength and perseverance along with a perfect reflection of her name, HOPE.”
Maggie Hope, Trisomy 8 Mosaicism, 5/13/2008, Phoenix, AZ
In 2007, after deciding they were done having children, Lissette and Stephen Lent 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 shared by most. All of the facts and some professional opinions pointed the family to very little hope. Born May 13, 2008, Maggie Hope was immediately placed in the Neonatal Intensive Care Unit (NICU) where she underwent multiple tests and was watched closely for weeks. In those unsettling moments Stephen and Lissette knew they had to step out of their despair, move forward and fight for hope.
Soon after she was home from the hospital, Maggie was diagnosed with a rare genetic disorder called Trisomy 8 Mosaicism Syndrome. A person with this syndrome has three complete copies (rather than the typical two) of chromosome 8 in some or most his or her cells. This condition can cause a wide range of 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, her family 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.
After many prayers, surgeries and instrumental therapies, she defies the odds and continues to surpass her Doctor’s expectations. She 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.
In March 2015, Maggie’s mother, Lissette Lent, wrote a children’s book entitled “We’re Not So Different After All” to help bring awareness, acceptance and hope to all children with special needs. Redglasses.org desires to be a catalyst for change and wants to partner with parents, teachers and community leaders to help raise a generation of children that are aware and unafraid of people that look and act differently.
Please check out our Kickstarter campaign and help us open the doors to much needed conversations at www.redglasses.org.