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Article Excerpt
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"Even now, it's still a surprise to Lily and me when we hear Grace moving around the house independently, walking up the stairs to her bedroom. We both pause and look at each other to make sure we're hearing what we think we're hearing," Shannon Kenitz relates, with the awe and thankfulness for Grace's progress apparent in her voice. For this mother, who was told that her daughter would never walk or talk, play games or laugh, hold her hand or say, "I love you," the sound of Grace's soft footfalls puttering around in her bedroom upstairs is like sweet music to Shannon.
Grace is now nine years old, with a bright smile and soft, soulful brown eyes that at once seem to shout and dance with youthful exuberance and yet whisper, "Oh, the troubles I've seen." Troubles, indeed. At just three months old, Grace was literally fighting for her life and would for the next three years.
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Baby Grace
Grace was born on March 6, 1999 at full term, and Shannon says her pregnancy and delivery were uncomplicated. "We took Grace home from the hospital in the usual amount of days and other than a touch of jaundice, she seemed healthy. I had such a feeling of joy. My older daughter, Lily, had a sister, and our family was complete."
But within days of arriving home, Grace's condition took a serious turn. "I started noticing a lot of eye-rolling, and Grace had very little awareness of her surroundings." Intuitively, Shannon knew something was amiss and began seeking specialists. At an ophthalmologist visit when Grace was three months old, she had an eye-rolling episode. The specialist immediately recognized the cause; Grace was having a seizure and was rushed to the hospital. Thus began an arduous three-year journey as Shannon shuffled Grace to doctors nationwide in a desperate search for a diagnosis and treatment. All the while Grace was failing to thrive, failing to gain weight, failing to move through the normal developmental stages that are paramount in those first years of life. But Shannon notes that Grace was also failing to give up, and as long as her baby girl was fighting to live then she was going to help her do so! She was not going to give up hope.
It wasn't until 18 months of age that physicians from the Mayo Clinic finally isolated Grace's diagnosis--an extremely rare and neurologically degenerative mitochondrial disorder. Grace was only the fifth case of this type of disorder worldwide. Doctors at Children's Hospital of New York-Presbyterian told Shannon to "take Grace home, make her comfortable, and to enjoy the time remaining with her." All these years later, Shannon still chokes up, recalling that moment as if it were yesterday. "I was supposed to take my daughter home to die."
By this point in the journey, Grace was three years old and had spent her entire life in hospitals; she was blind, had a feeding tube, could not sit up, crawl, or talk. The family's financial, emotional, and physical resources and stamina were at a breaking point, concerned family members and friends had begun to encourage Shannon to give up the fight, and her marriage was crumbling. "Even my parents, who had been so supportive since Grace's birth, were beginning to tell me it was time to let her go," she says. The emotional strain had reached critical mass, and Shannon's search for treatment for Grace had been exhaustive.
Then she heard about hyperbaric oxygen therapy.
Hyperbaric Oxygen Therapy
Shannon says she was first introduced to hyperbaric oxygen therapy, or HBOT, through her support group, Moms United for Moral Support. Hyperbaric oxygen therapy is based on the availability of oxygen to all parts of the body at the cellular level. For mitochondrial disorders, in particular, the ability of the body's cells to produce energy, and thus function properly, is dependent on the oxygen present to fuel those cells. Without oxygen, cells die very quickly, and if cells die in large numbers, the whole body dies. The better the oxygen exchange process, the better the cells perform vital bodily processes, the better the cells regenerate, etc.
Shannon began doing her own investigation on HBOT, fueled by...
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