Warrior Mom; Nancy

Nancy's Story

On August 12, 2009 my son John Anthony was born in Germany due to his dad being stationed there. My entire pregnancy we were told that we were having a perfectly healthy child. At birth we noticed that he did not have a right ear, it was completely shut where his ear should have been, we instantly new something was wrong but never expected how things really were. When he was 2 weeks old his Genetic testing came back and he was diagnosed with Cri du Chat Syndrome which is a very rare syndrome. In November he became very sick with Pneumonia, Doctors both Military and German did not believe that he could survive this Pneumonia and John and I returned to Los Angeles, CA to seek better healthcare and a slight possibility of him surviving. We arrived in CA a week before Christmas 2009. In January I took him to the ER because the Pneumonia returned, he was then transferred to Loma Linda Children's Hospital which was a better equipped hospital. His dad was sent on Emergency Leave to be by his bedside as his future was unknown. John was taken to surgery to correct an obstruction in his airway but the surgery failed and they had to place a tracheostomy for him to be able to breathe, his father had to return to Germany within 12 hours of the surgery while John was still in a coma. On our way to the airport we got a phone call that his condition had worsened and they had to do 2 emergency blood transfusions. At this point John was 5 months and only weighed 5.7lbs so he was a very fragile little boy. A feeding tube was place shortly after. during 2010 John spent about 90% of the time in the hospital.

In September 2010 I became pregnant with our daughter. John's health was worsening again and he was not tolerating his feeds and losing weight very quickly so in January John was hospitalized for his rapid weight loss and spent 3 weeks in the hospital. The day before John was discharged from the hospital his father served me with divorce papers and I was 4 months pregnant. On June 2nd 2011 I went into labor with out daughter, when my water broke they noticed that their was meconium in the water and that her heart rate was decreasing rapidly but thankfully she was born perfectly healthy. On June 19th 2011 John was hospitalized to have his trach removed but 2 days later John suffered 2 strokes. It took them over 15 minutes to resuscitate him. He was put on life support and spent 13 days in a come. When he woke up he was basically a vegetable, he no longer recognized anyone or interacted with us. He went home 3 weeks later but was still not tolerating his feeds. I would have to feed him every hour 24 hours a day. It took over a year for him to remember what he use to do before the stroke. He is now 4 years old and is still not able to sit down, walk, eat by himself, or do anything by himself. I feed him every 2 hours around the clock. He has done things that doctors said he would never do and is still alive after 3 close calls with death. He is my miracle.

Warrior story written by Nancy Martinez in her own words
 

 

For a related story, check out Maria's Story

Warrior Mom; Maria

Maria's Story

Gabby was born on July 2nd 2009 at Magee Woman's Hospital in Pittsburgh, Pa. At our 20 week ultrasound we found out that there was something wrong with Gabby. At 22 weeks we had a ultrasound performed at Magee Woman's and found out Gabby was missing part of her brain. They told us she would not be capable of living outside the womb and suggest we have an abortion several times. I am 100% against abortion and felt if and when God wanted her he would take her. At my 36 week appointment a famous physician came to my aid. He wanted to know why I was planning for Gabby's death... There was no time stamp on her foot so we had better go buy a crib and clothing for her. She was born on July 2nd via breech delivery. She came out screaming! My only wish was before they rushed her off to the NICU was to tell her I loved her so no matter what happened she knew I was there. Well as all miracle children do she showed them she was a fighter. On July 4th we left the NICU and came home. It was a bumpy road over the next couple months. We found out at 4 months she has a rare genetic condition called Muscle Eye Brain Disease. It is a form of congenital muscular dystrophy, Gabby has Cortical dysplasia(She is missing part of her brain) Cobble Stone Brain, infantile glaucoma, and how severe low tone in parts of her body and hi tone in other parts of her body. MEB is a regressive disorder. Over time her muscles begin to waste away and there is nothing we can do to stop it. She has had 7 eye surgeries 2 brain surgeries, a G-tube placement, teeth removal, and tonsils and adenoids removed. She also has had many stomach biopsy's, long hospital stays though out her short life. The doctors don't know how or why she is still here with us on this earth, according to "the doctor's books" she is a living miracle. She beats the odds on a daily basis.

 

Read more of Maria & Gabby's story by following Gabby's Facebook @ Giving For Gabby

 

 

 

 

Warrior Story written by Maria Roddy, as told on Facebook.

For a related story, check out Misty's Story

 

 

Warrior Mom; Misty

Misty's Story

Evan was born October 2012, and is currently 10 months old. He was diagnosed in utero with Hydrocephalus. At only a week old he had surgery for shunt placement in order to remove the excess cerebrospinal fluid from his brain. He was born with no gag reflex, and because of this has at 2 weeks of age a  G-Tube (gastrointestinal tube) was placed which he receives all of his formula through. During the time after his birth he learned that he is blind, and has detached retinas. He has also failed all hearing tests, although as his mother, I know he does have some hearing. Evan was released from the hospital at 3 weeks of age. At 2 months of age he began to have seizures, and it was then we learned that he was epileptic, thankfully his seizures have since been controlled. At 5 months he was diagnosed with Walker Warburg Syndrome, which is a severe congenital muscle dystrophy disorder associated with muscles of the eye, and brain disease. Because of this his muscles tone is extremely weak. His life prognosis for life in under 3 years. Yet as his mother, I will not give up! I will fight for him every second of his life! 

 

Read more of Evan & Misty's Story by following Evan's Facebook @ Team Evan

 

 

 

 

Warrior Mom story written by Misty Thompson as told on facebook

 



For a related story, check out Kimbra's Story