Petra's Battle with Lyme Disease
Donation protected
"If the Fenn family knew just how long an endurance, how weighty a care, how piercing a heartbreak, watching Petra suffer for so long…it would have been too paralyzing to contemplate. I was at Petra’s birth and saw her come into this world. I would like to invite you, ask you, if you will consider funding Petra on this journey to bring her back to health. Here is Petra Joy’s story."
Keren Cahn
Petra’s Story
Fall of 2011 our Petra was an eager, happy college freshman ready to jump at every opportunity that came her way. Sadly, soon into her school year she began having unusual neurological symptoms. As the months went by other concerning symptoms were added. We quickly began a mission of many doctor appointments. Symptoms subsided in the summer, but her sophomore year began with symptoms reoccurring. By Christmas break, Petra was disturbingly ill. We were very concerned and baffled. Every evaluation and labs were deemed normal.
In December when Petra arrived home from college, she lay on the couch and was too weak to get up as each day passed. She was having odd seizure like activity, body pain, and a host of other symptoms. She could not return to school. By February she was struggling to walk and needed a wheelchair for transfer. She was now couch ridden, 24/7. I was spending hours doing research and soon became convinced that Petra had Lyme Disease. We then recalled a tick bite that had been symptomatic. We found one of the most reputable N. Ca doctors that specialized in Lyme Disease and made an appointment. Clinically she was diagnosed with Lyme as well as positive testing with Igenex and the Western Blot. This became our introduction to the great controversy of Chronic Lyme. It was not recognized by The Center for Disease Control, therefore there was no approved protocol for treatment. Sadly, this meant insurance would not cover her needed treatments.
Petra continued to rapidly decline. Her body was extremely sensitive to all treatments we tried. We had to move at a snail’s pace. She became extremely sensitive to light, sound, and movement, and had to be confined to her room with the door closed and blinds down, only dim light. She remained too weak to walk or talk and body pain was always at level 8-10. Searing migraines continually. She battled with seizures that came at random, but were also provoked by sound and movement and these can provoke full body paralysis. This meant that only her mom could walk into her room and only very briefly. This is currently Petra’s condition today, although, thankfully, she is having less seizures. Watching this illness has been incomprehensible and our hearts have been broken over her suffering.
Oddly, and at random, Petra will have what we call a lifting. These “liftings” may last only an hour, sometimes a partial day, and at times a full day. Suddenly, her symptoms will drop by around 40%. Her doctor does not understand this phenomenon. We treasure these “liftings” when Petra has some relief from symptoms. This is when her sister and brothers will be able to go in and visit with her, and a friend can come over and sit on her bed with her. She will laugh and talk. But, very sadly, it typically takes 3-4 months before she has any lifting at all. This gives you a picture of how great and long her suffering is and has been.
In the recent two months we have had two dear friends tirelessly advocating for Petra. They are currently doing everything possible to find help. We have learned of a doctor/advocate that takes very difficult illnesses/cases and he has a research team. We are in the middle of the process of hoping he will take Petra’s case. We have another new doctor, and coordination happening between doctors. I have boxes of tests on my desk waiting for blood draws, and new findings from her current doctor with new things to try. Sadly, none of this is insurance covered. My dear friend/advocate is shouting from the rooftops with hopes to find help for Petra.
I will end this story with something personal to share about our daughter. As her caretaker and mother, I love my girl with all my heart. I have never know anyone who has had to endure such great illness with severity and longevity. Petra has battled valiantly. She has feared greatly at times, and wept deeply. She has told me of a depth of sorrow that I cannot even know, but only feel for her. What amazes me most is her continual love for me as I care for her, and that I see no bitterness of soul, nor anger towards God. Jesus has been faithful to carry her through each day, and she has told me that even in the darkest hours...He is with her.
Nanette & Marty
Keren Cahn
Petra’s Story
Fall of 2011 our Petra was an eager, happy college freshman ready to jump at every opportunity that came her way. Sadly, soon into her school year she began having unusual neurological symptoms. As the months went by other concerning symptoms were added. We quickly began a mission of many doctor appointments. Symptoms subsided in the summer, but her sophomore year began with symptoms reoccurring. By Christmas break, Petra was disturbingly ill. We were very concerned and baffled. Every evaluation and labs were deemed normal.
In December when Petra arrived home from college, she lay on the couch and was too weak to get up as each day passed. She was having odd seizure like activity, body pain, and a host of other symptoms. She could not return to school. By February she was struggling to walk and needed a wheelchair for transfer. She was now couch ridden, 24/7. I was spending hours doing research and soon became convinced that Petra had Lyme Disease. We then recalled a tick bite that had been symptomatic. We found one of the most reputable N. Ca doctors that specialized in Lyme Disease and made an appointment. Clinically she was diagnosed with Lyme as well as positive testing with Igenex and the Western Blot. This became our introduction to the great controversy of Chronic Lyme. It was not recognized by The Center for Disease Control, therefore there was no approved protocol for treatment. Sadly, this meant insurance would not cover her needed treatments.
Petra continued to rapidly decline. Her body was extremely sensitive to all treatments we tried. We had to move at a snail’s pace. She became extremely sensitive to light, sound, and movement, and had to be confined to her room with the door closed and blinds down, only dim light. She remained too weak to walk or talk and body pain was always at level 8-10. Searing migraines continually. She battled with seizures that came at random, but were also provoked by sound and movement and these can provoke full body paralysis. This meant that only her mom could walk into her room and only very briefly. This is currently Petra’s condition today, although, thankfully, she is having less seizures. Watching this illness has been incomprehensible and our hearts have been broken over her suffering.
Oddly, and at random, Petra will have what we call a lifting. These “liftings” may last only an hour, sometimes a partial day, and at times a full day. Suddenly, her symptoms will drop by around 40%. Her doctor does not understand this phenomenon. We treasure these “liftings” when Petra has some relief from symptoms. This is when her sister and brothers will be able to go in and visit with her, and a friend can come over and sit on her bed with her. She will laugh and talk. But, very sadly, it typically takes 3-4 months before she has any lifting at all. This gives you a picture of how great and long her suffering is and has been.
In the recent two months we have had two dear friends tirelessly advocating for Petra. They are currently doing everything possible to find help. We have learned of a doctor/advocate that takes very difficult illnesses/cases and he has a research team. We are in the middle of the process of hoping he will take Petra’s case. We have another new doctor, and coordination happening between doctors. I have boxes of tests on my desk waiting for blood draws, and new findings from her current doctor with new things to try. Sadly, none of this is insurance covered. My dear friend/advocate is shouting from the rooftops with hopes to find help for Petra.
I will end this story with something personal to share about our daughter. As her caretaker and mother, I love my girl with all my heart. I have never know anyone who has had to endure such great illness with severity and longevity. Petra has battled valiantly. She has feared greatly at times, and wept deeply. She has told me of a depth of sorrow that I cannot even know, but only feel for her. What amazes me most is her continual love for me as I care for her, and that I see no bitterness of soul, nor anger towards God. Jesus has been faithful to carry her through each day, and she has told me that even in the darkest hours...He is with her.
Nanette & Marty
Organizer and beneficiary
Hannah Fenn
Organizer
Loomis, CA
Martin Fenn
Beneficiary
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