Langston Rose was born via cesarian section. She seemed perfectly healthy and we, her parents, were led to believe so. When Langston was on day 2 of life, she mysteriously stopped breathing for an unknown amount of time. She was admitted to the NICU, had devastating seizures and remained in a comatose state for several days. All of her basic reflexes were gone. She was being kept alive via ventilator, heating system, and IV's that went directly into her umbilical chord. Things were looking grim. Slowly, Langston came around. After 54 days in the NICU, a tracheostomy, a g-tube (feeding tube), and nissanfundoplication, she was sent home. It wasn't a typical experience. Langston sustained severe damage to her basal ganglia which would inhibit her from even the simplest of milestones. Langston is almost three years old now, she cannot sit, she cannot roll, she cannot eat or swallow, she is unable to speak, she still cannot hold her head up, she cannot walk. Langston may never meet any of these milestones. Our little angel lives with severe cerebral palsy. After hours of research, phone calls, and emails, we have been granted an option to help repair some of her damaged brain tissue. We are working towards the opportunity for stem cell treatment.
What do we realistically expect out of stem cell treatment?:
- Improvement in Langston's ability to swallow. This will not only give her an opportunity to eat orally, but it will lessen her chance of pneumonia, in which some cases, especially with infants, can be devastating.
- Decrease Langston's neurological irritability. Langston cannot sit alone, in a car seat, in a stroller, or sometimes even in her crib without inconsolably screaming. In Langston's world, her senses are minimal, and she feels constant anxiety and fear when not directly interacted with.
- Improvement in Langston's vision. Langston suffers a degree of cortical visual impairment due to her injury. She is extremely farsighted and requires glasses.
- Decrease Langston's risk of seizure activity. Since the neurons are not properly communicating with one another, Langston is at a high risk for a misfire, or as you may know it, a seizure.
- Give Langston a better chance at someday walking on her own, even if it is just a few steps. As of now, her brain causes her to arch uncontrollably, she has writhing movements, and her muscles are extremely tight. She might not ever sit up on her own. It is my dream, for her to at least sit unsupported and not suffer from the pain that may be caused by the writhing uncontrollable movements.
Please help Langston have the opportunity to receive this life changing treatment.