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

Warrior Mom; Kimbra

Kimbra's Story

As I sat down to write my story, I wasn't really sure where I should begin. So, I decided to start from the beginning. My story, like many others begins with a childhood that was rough for several reasons. At age 13 I met a guy who made my life happier, he gave me an escape from my bad home life, and made me smile. We became very close and soon were spending every minute possible together. After dating for a few years, I found out at the age of 16 that I was pregnant with our first child. November 1999 our first son was born, and life as teenage parents began. With the life of teenage parenting came tremendous changes, and I eventually decided to quit High School in order to find a job. Life was far from perfect but we were happy.
When our son was 5 months old, I found out I was pregnant again, and a few months later in September of 2000 I became a 17 year old wife. Our second child (a daughter) was born in February of 2001. Unfortunately due to poor health care, and mistakes made by the hospital she was delivered 10 weeks premature, and spent the first 5 weeks of her life in a neonatal intensive care unit. In April of 2001 at the ages of 18 and 20 we decided to uproot our small family and move 900 miles away from home. Once we moved things began a downward spiral for us, and 6 short months later we were home. Our move caused us to grow up a great deal, and upon returning home we both got jobs, and things were finally starting to look up for us. Then, one evening as I was at work waiting tables, my chest began to hurt. By the end of my shift the pain was so severe that I asked my mom to meet me at work, and drive me to the Emergency room. While there it was discovered that I was pregnant, but not only was I pregnant I was approximately 5 months pregnant. I was shocked, at this point I did not know whether to laugh or cry, here I was 18 years old and pregnant with my third child. The next morning I went on what I expected to be a routine prenatal visit, when the doctor decided it would be best to do an ultra sound to see exactly how far along I truly was. It was during this ultra sound my husband and I heard the technician speak words like, water, hole, and deformities. Although we were told nothing, we both knew something was wrong. When we were called back into the doctors office, she began to tell us that she suspected that our baby had a condition called Hydrocephalous and although this was a serious condition, she did not feel it would be life threatening, and wanted to send us to a neonatal specialist to confirm her suspicions.

 Two weeks later we were sitting in the office of a specialist when we got the news, that our third

child (our son) had a condition called Hydranencephaly, and that his changes of surviving the pregnancy were only 50%. If he did however survive pregnancy and delivery he would likely only live a few hours at most. They told us that our son would be blind, deaf, unable to regulate his temperature, and overall a vegetable without any knowledge of his surroundings. The doctors began to suggest abortion, and tried to urge us in the direction of terminating the pregnancy telling us that we were young, and we already had two healthy children to think of. I of course denied, telling the doctors that although they were telling me my child would not live, I felt it was my duty as his mother to give him every opportunity possible at life. A few months later in March 2002 our son was born, and three days later much to the astonishment of doctors he went home under the care of a hospice. The next several years were an extreme roller coaster. On several occasions we thought we were going to loose our child, and many times the pediatric intensive care unit became our home. However, after 6 years of medical hell our sons health began to level out, and he was doing amazingly well. So well in fact we decided that the services of hospice were no longer needed. Sadly over 8 years our marriage had become anything but happy, and eventually there was far more bad times then good. In June of 2008 we decided that neither of us could do it anymore.

So, there I was a 25 year old, uneducated, single mom of 3 and on my own for the first time in my life. Soon after my divorce, I began to date a close friend, and only a few months later we found out that we were expecting (SURPRISE!) Our son was born in January 2010, and we were married 4 months later in May. Things were hard, and financially we struggled, but we were happy and my life was finally starting to feel settled. Months passed, and things were amazing. We both got better paying jobs, and moved into a bigger house. All four kids were doing wonderful, and we were becoming a happy family. Then on August 9, 2011 our world came crashing down. That day had been a day like any other preparing for the older children to return to school a few days later, but that evening our lives stopped. My son Dillion had been taking a nap in his room, and I when I went to check on him that evening, I discovered that he had passed in his sleep. I still remember that night very clearly. I remember screaming for my husband to call 911. I remember every word spoke to the operator on the other end of the line. I remember doing CPR. I remember the tears pouring down my cheeks as I begged my son to breath, and I remember holding my son in my arms when the paramedics said "Time of death 11:13pm." The days, and weeks that followed my sons death were like a nightmare. Thirty hours after my son passed away, his best friend (another disabled child) passed as well. Then two weeks after my son passed, we lost our home, as the unexpected funeral expenses put us in a place where we just simply could not pay the bills. We were homeless! Fortunately we were able to move in with my little brother and although the conditions were far from ideal, we had a roof over our head, and we were thankful. Months went by, and we were beginning to get back on our feet. We found a beautiful trailer in the country and moved, hoping that this would be the place where our hearts would begin to heal. Unfortunately just two short months later we discovered that we had been scammed by our landlord, and were forced out of our house by the sheriff, when the house was posted as foreclosed. Several months of couch hopping, and we once again found a rent house, it wasn't great, but it was a place we could call home. We moved in, and prayed that life would finally settle, and that we may finally begin to heal.

Unfortunately our lives were far from being settled. I had been sick for months, but had ignored it assuming that my sickness was likely caused from the severe stress of my life over the last 10 months. Eventually though the sickness became so severe that I simply could not ignore it anymore. Upon going to the doctor, they began to run many tests, and three days later I heard the words no woman ever wants to hear. In the cold office of a doctor with absolutely no bedside manner, I was told that I had stage 3 uterine cancer. The doctor went on to say that although they would prefer to do surgery immediately my blood counts were such that it was unsafe for me to have surgery, and therefore treatment must be started that day. Two months later on August 9, 2012 (the one year anniversary of my son's passing)

I went into surgery and had a total radical hysterectomy. After surgery, treatment continued for two more months, until I was told that once again due to poor health care, and no medical insurance I would not be able to continue with treatment. The doctor went on to tell me that while I was technically cancer free the chances of recurrence were significantly increased, and how very sorry he was that the Indian health system simply would not budge on their decision. Of course after hearing this, I fell into a deep depression. Pretty soon my marriage was suffering, and after a little longer, we were all totally miserable. On Christmas eve 2012 my husband and I decided that we were going to have to go our separate ways. There I was, this time 29 and once again on my own. I immediately got a job, and proved not only to myself, but to everyone else that I could do this. I wasn't going to crawl into a hole and die (even though I felt like it at times). I was going to fight! Fortunately after 3 months of separation in February 2013 my husband and I reconciled. Life is still a struggle at times, and things are far from perfect. But, we have learned that being happy doesn't mean that everything is perfect, it means you have learned to accept the imperfections. We are of course still healing, but we are fighting. Every day we fight for our lives together, and we fight for our happiness. Life has dealt us more than our fair share of bad cards, but we have learned that it's not about waiting on that winning hand, it is all about fighting to win even when you are dealt a few bad cards!

Warrior story written by Kimbra in her own words.

 

 

Check out my co-founders story @ Warrior Mom; Christy

Warrior Mom; Barbara

Barbara's Story

 

 



I had a still born daughter in 2001, delivered my first son in 2005, and had three miscarriages (all between 4-5 months) over the next four years. Every loss was more difficult than the last. Doctors couldn't figure out what kept happening. All of the testing they did came back normal. Everything indicated I should be having healthy, successful pregnancies. I didn't know if I could bear to loose anymore children. In early 2010, I became pregnant with my sixth child. The pregnancy was touch and go. At 26 weeks I went to the hospital one more time. This time I hadn't felt baby movement in a few days. My husband and I figured it was probably just another "routine" visit, so I drove myself to the local maternity hospital. I could tell after the nurse did my triage this wasn't the typical visit. The doctor was in my room moments after I had been admitted. After about two minutes of an ultrasound he left. There was only a curtain, rather than a door. I could hear the doctor on the phone and talking to the nurse. All I clearly understood was "prep the O.R. Immediately" and "bed 5 needs to be prepped". My heart sank. I was in bed 5. I didn't know what was wrong, I didn't understand why I was going to surgery again. A months before, I had to have a very dangerous surgery performed to remove my appendix. The doctor came back in. I didn't give him time to tell me I was going to surgery. I blurted out "WHAT IS WRONG!" He looked at me with a look of pure sympathy. I knew then, it was the baby this time. He told me that I was going to be having an emergency C-section  because my placenta and uterus had collapsed on the baby and he was going to die. I called my husband, somehow managed to convey something was wrong and our child was being born that night. I lost so much blood I flat lined on the table and don't remember many hours after that. I was barely coming to in ICU when I realized my husband was talking to a nurse at the nurses station. I couldn't talk as I had a breathing tube down my throat. I heard the nurse tell him "we've done all we can do. If she is going to make it through the night, it is going to be up to her". All I could think was I can't die! Not now! Not yet! I pulled through and later that night (actually probably around 3am the next morning) I woke up. My husband was there. I asked him if the baby was ok and he said he was. I can only imagine what my husband went through arriving at the hospital, thinking you've lost your infant, and then being told your wife might not make it. Once I was fully stable the doctor released me to critical care. On the way to my room we stopped by NICU and I met my son. Things were bad but the prognosis was

good. The next day things got worse. About mid morning I got a call in my room from my son's doctor. "We will need you to make a decision as to whether or not we will continue life support". For the third time in 12 hours my heart dropped out of my chest. I called my husband who was moving us to a new apartment, we had to be out. I explained what the doctor said. We spoke to the doctor. Begged for an alternative. He said there were a few treatments and test they could try, but he wasn't hopeful. We decided if things continued to be bad or get worse we would say goodbye to our son in two days. Those three days were the hardest days I have ever faced. We didn't understand, it wasn't fair. Why did everyone else get have keep their babies and mine kept getting taken away. The night I said goodbye to my son was the most angry, hurt, confused, and depressed I have ever been. My son's doctor wanted to perform an autopsy. He told us he suspected he knew what was happening. Three months after my son passed I got the news, I have a rare disease called neonatal hemochromatosis. The basic definition was my body was killing my babies. I was devastated. I didn't know what I was going to do. Two weeks after that phone call, I found out I was pregnant again. I called my son's doctor. I was scared and didn't know who else to call. He gave me the best news I could imagine. "There is a treatment and you can have a successful pregnancy". Thanks to loosing my son I have my seventh child (second living). You see, evidence that the mother has NH can only be found in the liver of the infant. In order to run the specific test needed the baby has to have passed as a neonate. Though I wish I never had to go through loosing my son, I understand why. God needed a couple of things to happen. He needed my husband and I to become a stronger united couple, something we did over the time of the pregnancy and kissing our son. We learned to rely on each other. God also needed us and my doctors to know about this disease in my body. The thing is God knew he was about to give us an amazing, though trying, blessing. He gave us our Monkey. I say he is trying, not because if his personality or his behavior, but because Monkey has multiple defects with his heart and kidneys. Monkey is now two and has had three open heart surgeries and two kidney surgeries. I fight right alongside my little man every day. I wish I could say one day he will not know a life filled with doctors and surgeries but that will never be the case the surgeries manage his defects of which there is no known cure for.

 

 

Warrior Story written by Barbara Amos in her own words

 

 

 For a related story, check out Tarinna's Story

Warrior Mom; Sarah

Sarah's Story
 

 



I am the 44 yr. old mother of three and I just do what I have to do and follow our family motto;

"Keep On Keepin On"

On January 15th of last year at 10:30pm the police knocked on my door and informed me that they needed my 14yr. old son, he had text all his friends saying good bye. Little did I know my son who was asleep on the couch had planned to take his life. The police woke my son up and took him to the hospital for evaluating. It was fourteen hours later before I knew anything more. After talking with the doctors and my son the decision was made that he would be transferred to a hospital three hours away.

I immediately put my life on hold to make sure my son received the best care available. I had not been on my job long enough for FMLA so all I could do was step away and give up a really good, great paying job. Once he came home I was there each day after school doing my best to encourage him as he continued his downward fall to rock bottom.

Without my job I was forced to close up my house, and move in with my in laws. My husband works in Alaska and I was on my own to figure it out. While living with my in laws I continued to seek help for my son who was not only cutting his arms from shoulder to wrist but choking himself by putting a belt around his neck.

 By the end of March he had to be hospitalized again. Twice a week for 95 days I drove 6 hours round trip to visit my son while trying to still be mom for my other children and grandchildren. I have gone through our life savings on my son's medical bills. Have not been able to return to work because my son can't be left without supervision for more than a few hours at a time and I've had to homeschool him.

We now know he suffers from Major Depressive Disorder and Sensory Processing Disorder everyday is a new adventure, but I'm mom so I wake up each day thankful for my God given adventure skills. I also have a son who had a nervous break down at 22 and a bi-polar daughter with a high risk pregnancy my husband is away working 9 months out of this year and my family is 14 hours away. If this makes me a warrior fine, it's been worth the battle.

My children My world!

Warrior Story written in Warrior's own words, anonymity was requested

 



For a related story, check out Jean's Story