Our daughter was born with a rare condition. At 5 weeks of age, she turned blue and stopped breathing. We found out later that her epiglottis didn’t function correctly. Her pumped breast milk would pour into her lungs, and what did go down to her stomach would come back up as severe, silent reflux and burn her esophagus. She would stop breathing. She had central and obstructive apnea. She had severe scoliosis with a C-curve greater than 50 degrees. Her ribs jutted out due to the curve, she could not stand straight, and the prognosis would that it would worsen as she grew and aged. She had an NG tube at 3 months of age, a Gtube placed at 5 months of age, was on oxygen and worsening. When my milk supply dropped after 6 months of pumping, we put her on formula. She worsened. She was put on oxygen for her apnea. After 14 months of pumping the meager amounts I could, she was put on medical formula for Gtubes. She worsened. They told us to prepare for the inevitable. We packed her up with her feeding pump and portable oxygen equipment and took her to her family to be christened. To say hello and goodbye. Any illness she picked up led to poor swallowing, which led to aspiration pneumonias, more hospitalizations, and closer to what was considered inevitable. She had lung disease.
She is now 4 years old. Due to a lot of therapy, amazing people, hard work, nutritional changes, Mehta casting for scoliosis, and alternative therapies, she is still here with us and thriving! She is over 100 days orally eating and drinking everything. She is potty training. She is walking and when she is running she uses her walker. She is our miracle.
We have been following research on stem cell therapy for children like her. Stem cell therapy is in the research stage. In 5 to 10 years, this will be used as common practice. For now, it isn’t. Duke University is studying stem cell therapy for children particularly like her using cord blood stem cells. It is a double-blind, placebo study. If she were given the placebo, we could not ignore the fact that we had passed the opportunity to make a big change in her healing, in her recovery, and in her possible outcome. We know that the sooner the individual is treated with stem cell therapy, the bigger the impact. For her 5th birthday this year, we want to give her the best possible. We want her to take part in this research. We want to give her what is possible. We have found a clinic in the US using donated cord blood that can provide this for her. They have already had great results for children that survived drownings, CP, and other similar conditions.
At our Children’s hospital, they want as much information as we can give them about our daughter’s treatment. There are no other children with her condition that are this high functioning documented anywhere. Most children with her diagnosis do not survive infancy, few make it into their second decade. She is changing what is possible. Currently stem cell therapy is being used for children at our Children’s hospital for cancer. If this is successful for our daughter, perhaps we can push our medical community to include other children that can be directly impacted by this type of treatment.
We have gone as far as we can financially. Our medical bills are extraordinary. Our out-of-pocket costs for therapies and supports have reached the end of what is possible. She is slated for another Mehta casting for her spine and attends multiple therapies weekly in addition to her intensives. We very much want to offer her this opportunity for stem cell therapy but we simply can’t without your help.