- K
- K
On Jan 11, 2019 our daughter Remie was diagnosed with Microgastria limb reduction defect which is a rare disorder with less than 60 previously reported cases. Children born with this condition have a small stomach (microgastria) and limb abnormalities. Symptoms may include vomiting, aspiration pneumonia and growth problems. Abnormalities involving the heart, lungs, kidney and gastrointestinal system are also symptoms of this condition. This condition is caused by an error that occurs during the development of the embryo. Treatment may involve reconstructive surgery (Hunt-Lawrence pouch) to help improve the child's feeding abilities.
Only two doctors in the United States specialize in this particular disorder. This disorder affects our daughter with a small stomach, dilated esophagus, Syringomyelia in her mid spine, a missing left arm, a missing right kidney, small tongue, small chin, and a birth mark on her face which all tie into this one disorder. She has to have a full abdominal ultrasound to check her spleen and liver. Remie is 11 months old and weighs only 14 pounds she can only take 1-2 oz at each feeding and feeds frequently mostly at night so we’re not sleeping. The plan for a trip to another hospital is to see a doctor who specializes in this disorder and can possibly do surgery on her stomach and/or esophagus or refer us where we need to go. The goal is to get her eating more, and more efficiently, so that she can gain weight and get stronger. Since Remie was born, we have been in and out of doctors offices and hospitals in three different states multiple times a week trying to get answers which has caused Derrick to be the only one providing for our family of 6. We have three other young boys ages 8,7,6.
Because we are anticipate multiple trips to get the help she needs, we are asking for help to get us there! Any donations will be used for our flights, food, and travel expenses. We don’t know how long we will have to be there or if it will be more than one trip.
Derrick will also need support to help take care of the boys at home and continue to work while I am with Remie to get her well. We appreciate your prayers and donations, if you’re able. We want to get our baby girl better!!
Only two doctors in the United States specialize in this particular disorder. This disorder affects our daughter with a small stomach, dilated esophagus, Syringomyelia in her mid spine, a missing left arm, a missing right kidney, small tongue, small chin, and a birth mark on her face which all tie into this one disorder. She has to have a full abdominal ultrasound to check her spleen and liver. Remie is 11 months old and weighs only 14 pounds she can only take 1-2 oz at each feeding and feeds frequently mostly at night so we’re not sleeping. The plan for a trip to another hospital is to see a doctor who specializes in this disorder and can possibly do surgery on her stomach and/or esophagus or refer us where we need to go. The goal is to get her eating more, and more efficiently, so that she can gain weight and get stronger. Since Remie was born, we have been in and out of doctors offices and hospitals in three different states multiple times a week trying to get answers which has caused Derrick to be the only one providing for our family of 6. We have three other young boys ages 8,7,6.
Because we are anticipate multiple trips to get the help she needs, we are asking for help to get us there! Any donations will be used for our flights, food, and travel expenses. We don’t know how long we will have to be there or if it will be more than one trip.
Derrick will also need support to help take care of the boys at home and continue to work while I am with Remie to get her well. We appreciate your prayers and donations, if you’re able. We want to get our baby girl better!!