Jaelie was born full term and healthy – a beautiful infant girl whose birth was celebrated by her family. Within a few short months, a diagnosis of spinal muscular atrophy led to her family’s need to reprioritize their lives in order to provide the necessary care for their daughter’s fight against this progressive neurological disorder that severely impairs the body’s mobility, respiratory effort, and feeding tolerance. Jaelie’s health care provider prescribed donor human milk for Jaelie when her mother’s supply no longer was adequate. Continuance of human milk for this child, now almost two years of age, makes the difference between frequent infections and hospitalization, loss of strength, and compromised respiratory function.
With limited family income, and no coverage of the milk from the state’s Medicaid program, the family applied, and was accepted, for charitable care through MMBA. The gift of funds to cover Jaelie’s milk is a gift of life for that child. There is no recovery from SMA, but there is a quality of life to be gained by the provision of human milk, and that gift is priceless.
Recipient mom Melissa says it best:
The Mothers’ Milk Bank at Austin is saving my daughter’s life. She needs human milk to survive her very rare neuromuscular genetic disease called Spinal Muscular Atrophy. It is the number one genetic killer of children under the age of 2. SMA affects the muscles used for sitting, crawling, walking, and even more severely, swallowing and breathing. Since Jaelie has been on donor milk she has been doing so much better! The last time that she was sick was when we were completely out of donor milk. I had to stop working since Jaelie's hospitalization. We are so thankful and blessed to be receiving charitable donations from the milk bank. MMBA has been a blessing to our family!"