Alternative therapy

Our beautiful daughter, Katherine, was born in July 2010. And what a joy her birth brought to our family: she was our first child and the first grandchild for both maternal and paternal grandparents! Although she was born at only 35 weeks gestation, doctors assured us she was a healthy baby and we should “forget” that she was born premature. And indeed, she was normally developing and reaching her milestones, with no indication of her prematurity. Naturally, we celebrated her every step, her every word and welcomed her bright, burgeoning future. No one could have predicted how things would change. In an instant, our lives changed forever.
Shortly after her first birthday, on September 17, 2011, Katherine suffered a febrile seizure that totally incapacitated her. For six weeks we didn’t know if she would survive. Doctors told us to be prepared for the worst! Shortly after her hospitalization, a breathing tube was required to help her breath. Day after day, the results were getting worse and worse: repeat head MRI and CT scans showed defuse edema with increased pressure in the brain and loss of gray-white matter differentiation in both hemispheres. Doctors decided to place a tube in her skull to relieve the pressure in the brain. Her overall conditions worsened and she remained in critical condition. Subsequent tests continued to show increased pressure in the brain and slow brain activity. Thereafter, a gastric tube was placed in her stomach to feed her artificially. By the end of October, when doctors attempted to remove the breathing tube, Katherine developed extra tissue in her airways and she required a tracheotomy (a hole in her throat to keep her airways open). Also, the CT scan showed gross volume loss. Needless to say, we were devastated! To make things worse, doctors asked us to sign a DNR (“do not resuscitate” in case Katherine’s heart stopped or she stopped breathing). We couldn’t do it!
We never imagined that our spirited, curious, rambunctious toddler would lose all muscle tone, be unable to hold herself up, require feeding and breathing tubes, and need 24-hour care. With her sudden illness, our lives did indeed change forever.
Although she remained critical, at the beginning of November 2011, 6 weeks after being in the intensive care, Katherine was transferred to a rehab facility.
The cause of her sudden demise is still unknown, but her current diagnosis is “encephalopathy of unknown etiology” (meaning that her brain is injured, but the cause of the injury is unknown). As of result of her brain being injured, she has cerebral palsy (she cannot move her legs and hands on her own and the muscles are very tight) and cortical blindness (a total or partial loss of vision). Three years since the febrile seizure, she continues to require 24 hour care. Katherine’s overall condition has improved, but has required a lot of efforts on our part: we took her for second opinions, we didn’t accept the limits imposed by the doctors (“she would not be able to do anything on her own”, “she would depend on a breathing machine for the rest of her life”, “she would never eat by mouth”), we assumed risks, but as a result she is now breathing on her own (the tracheotomy was closed and she had a reconstructive surgery of her airways) and she is eating and drinking by mouth, without a need for a gastric tube. Every day we renew our hope and efforts in finding a way to restore Katherine’s physical and mental potential. We’ve traveled extensively to procure the necessary treatments/therapies.
In April 2013, we learned of a study conducted at Duke University where patients with cerebral palsy received stem cells transfusions that showed positive results. Upon viewing a video of Katherine’s level of functioning, they informed us that her level was too low to qualify for the study. However, if we wanted the transfusion it could be done at the hefty cost of $20,000. As the transfusion was experimental the insurance refused to cover it. But the sooner we would do it, the better it would be for Katherine because the brain grows the most before a child turns three. Time was of the essence since she was turning three on July 20, 2013. We decided to go ahead with the transfusion hoping to see an improvement. As time passed, we observed that Katherine’s awareness and alertness improved. The transfusion had made a marked change in her, but she still had a way to go.
Next, we explored a special kind of therapy, Medek Therapy, which was conducted in Chile but had a year long waiting list. Finally, we were called to Chile in March of this year! We gathered our resources and took Katherine for two weeks, although the other children that we met there were there for months or even years of intensive therapy - and that showed in what they were able to do.
Katherine’s results were also good considering the time we spent there: she started to keep her head up more often and for longer periods of time; when we put her standing against a ball, she would push herself up; her awareness improved. Katherine needs to go back for this therapy twice per year and for longer periods, but the costs are very high: the therapy alone costs over $2,000 per week, while the travel to Santiago is almost $7,000 for three people (one person alone is not able to take care of Katherine, therefore my mom came with us to help). In addition to this, we had to rent an apartment because we needed to prepare food daily for Katherine as her diet is based solely on pureed food.
Katherine’s best prognosis is to spend extended periods in Santiago to receive this therapy, but we have exhausted our funds. We see that Katherine’s condition is improving daily and we need to do everything in our power to make this happen. Others told us about an intensive therapy program in Europe. There are unlimited opportunities; however the budget is the limit. Please help us raise the funds for Katherine’s therapy! We would do everything and anything to give Katherine an opportunity to reach her potential. We miss our daughter so much! Since September 17, 2011 Katherine has not uttered a word, moved independently or responded to an embrace. We hope one day we will hear her voice again and feel her arms around us. Please help us to help her!