Help the twins - Ally and Maddy
Donation protected
The Schultze Family needs help. I'm Jeff (a.k.a. "Dad") and together with my wonderful wife, Jaime (a.k.a. "Mom"), we have been doing everything we can do in order to stay strong and NOT ask for help. Unfortunately, we have come to a point where we recognize that we are quickly approaching the boundaries of our abilities to cope and stay positive. We need to swallow our pride and humbly ask our friends, our families, and our global community to come together and lend us a helping hand.
Here is a little background:
Our twin daughters, Allyson (Ally) and Madelyn (Maddy), were born on July 1st, 2015. Unfortunately, these beautiful baby girls have had a very tough start in life.
At 19 weeks gestation, Maddy (a.k.a. "Baby B") was diagnosed with Congenital Diaphragmatic Hernia (CDH). Many tests, many doctors, and many hospitals later, we learned that the CDH was quite severe and that Maddy's abdominal contents had been living up in her chest cavity, crowding the area where her heart and lungs should be. This caused her heart to be "squished" and her lungs to under develop, as well as created the need for a surgeon to relocate Maddy's "tummy contents" (intestines, stomach, liver, spleen, etc.), install a synthetic patch to the diaphragm (sewn to her ribs), and create room in her chest for her heart and lungs to grow.
Throughout the pregnancy, about the only good news we received was consistent reassurement that "Baby A" (Ally) was doing great and was expected to be a normal, healthy kiddo.
The day the twins were born, Maddy was not doing well at all. Her oxygen levels were plummeting and the doctors could not provide enough support to stabilize her. She was on an oscillating ventilator and just couldn't keep up. She was doing so poorly that Jaime and I were asked if we wanted to hold her while she passed. As we gathered our family and cried, we waited for our sweet baby girl to show up and take her last breaths...but she never showed up! Maddy was determined to fight, and that she did. She fought hard and she stabilized over a nail biting course of many weeks.
Fast forward 9 weeks. Maddy has survived a complicated CHD repair surgery (turns out that she basically has no diaphragm at all on the left side). She has gone through multiple processes of stabilization, has been on various types of ventilators as the doctors wean her off of the mechanical breathing assistance, and is now resting comfortably today on a "ram cannula" that is providing pressure to her lungs, moderate levels of oxygen and a small concentration of nitric. We still do not have any idea how long she will remain in the NICU, but we do know that the nurses & doctors at St. David's are amazing and that Maddy is in great hands.
But here is where our story takes yet another heart wrenching turn...
Ally (the "healthy" twin) has been experiencing what appears to be seizure activity. She was always the smaller of the twins and she has been a struggle to feed due to severe reflux. Until today, the doctors have been relating these seizure events to things like "common newborn startle reflex" or to feeding issues like mild choking.
Well, today (09/05/2015) Ally was definitively diagnosed with "Early Infantile Myoclonic Encephalopathy". This is a very rare condition that is very serious. More than half of the kiddos with this horrific condition don't see their 1st birthday. Of those that do survive, they suffer extreme developmental problems. We were told today that IF Ally does survive, she may never walk, talk, or live any version of a "normal" existence.
We need help.
We live 45 minutes from the hospital(s) that our girls are being treated at. And yes, they are at different hospitals. Ally is at Dell Children's and Maddy is at St. David's.
Funds raised through this campaign will be used to help us cover: insurance deductibles/co pays (this year and in future years), travel expenses, meals while away from home with the girls, special developmental toys, devices & equipment to help stimulate the kiddos' growth and engagement, counseling services for our family, child care for big brother (William), as well as other expenses related to coping with these tragedies. We sincerely hope that we don't have to plan a funeral for either of our daughters, but the harsh reality is that we may be put in that position and these funds will also help out there.
Jaime and I truly appreciate the help of our friends, family, and our global community. Please help if you can.
Here is a little background:
Our twin daughters, Allyson (Ally) and Madelyn (Maddy), were born on July 1st, 2015. Unfortunately, these beautiful baby girls have had a very tough start in life.
At 19 weeks gestation, Maddy (a.k.a. "Baby B") was diagnosed with Congenital Diaphragmatic Hernia (CDH). Many tests, many doctors, and many hospitals later, we learned that the CDH was quite severe and that Maddy's abdominal contents had been living up in her chest cavity, crowding the area where her heart and lungs should be. This caused her heart to be "squished" and her lungs to under develop, as well as created the need for a surgeon to relocate Maddy's "tummy contents" (intestines, stomach, liver, spleen, etc.), install a synthetic patch to the diaphragm (sewn to her ribs), and create room in her chest for her heart and lungs to grow.
Throughout the pregnancy, about the only good news we received was consistent reassurement that "Baby A" (Ally) was doing great and was expected to be a normal, healthy kiddo.
The day the twins were born, Maddy was not doing well at all. Her oxygen levels were plummeting and the doctors could not provide enough support to stabilize her. She was on an oscillating ventilator and just couldn't keep up. She was doing so poorly that Jaime and I were asked if we wanted to hold her while she passed. As we gathered our family and cried, we waited for our sweet baby girl to show up and take her last breaths...but she never showed up! Maddy was determined to fight, and that she did. She fought hard and she stabilized over a nail biting course of many weeks.
Fast forward 9 weeks. Maddy has survived a complicated CHD repair surgery (turns out that she basically has no diaphragm at all on the left side). She has gone through multiple processes of stabilization, has been on various types of ventilators as the doctors wean her off of the mechanical breathing assistance, and is now resting comfortably today on a "ram cannula" that is providing pressure to her lungs, moderate levels of oxygen and a small concentration of nitric. We still do not have any idea how long she will remain in the NICU, but we do know that the nurses & doctors at St. David's are amazing and that Maddy is in great hands.
But here is where our story takes yet another heart wrenching turn...
Ally (the "healthy" twin) has been experiencing what appears to be seizure activity. She was always the smaller of the twins and she has been a struggle to feed due to severe reflux. Until today, the doctors have been relating these seizure events to things like "common newborn startle reflex" or to feeding issues like mild choking.
Well, today (09/05/2015) Ally was definitively diagnosed with "Early Infantile Myoclonic Encephalopathy". This is a very rare condition that is very serious. More than half of the kiddos with this horrific condition don't see their 1st birthday. Of those that do survive, they suffer extreme developmental problems. We were told today that IF Ally does survive, she may never walk, talk, or live any version of a "normal" existence.
We need help.
We live 45 minutes from the hospital(s) that our girls are being treated at. And yes, they are at different hospitals. Ally is at Dell Children's and Maddy is at St. David's.
Funds raised through this campaign will be used to help us cover: insurance deductibles/co pays (this year and in future years), travel expenses, meals while away from home with the girls, special developmental toys, devices & equipment to help stimulate the kiddos' growth and engagement, counseling services for our family, child care for big brother (William), as well as other expenses related to coping with these tragedies. We sincerely hope that we don't have to plan a funeral for either of our daughters, but the harsh reality is that we may be put in that position and these funds will also help out there.
Jaime and I truly appreciate the help of our friends, family, and our global community. Please help if you can.
Organizer
Jeff Schultze
Organizer
Liberty Hill, TX
