Prayers for Lily
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On November 7th, 2015 our world was turned upside down by what would later be called “an unnamed virus” by the infectious disease specialists at Cooper Hospital. This virus triggered a series of events in the body of my beautiful 11 year old child, Lillian Jayne Gravener.
Lily has always been a very happy, active little girl. She started every day with dancing & singing. That is why I gave her the nickname, “rainbows, sparkles & sunshine.” She has always been a child so full of joy, with a tremendous love for life! She was an excellent student at Rohrer Middle School in Haddon Township, NJ, making grades high enough to earn her a spot on the Principal’s List for academics in the 6th grade. She has been dancing in two dance classes a week for the last three years and has absolutely loved performing in several local musical theater productions. But all of that has now changed dramatically.
Lily returned to school after the virus last November, but was still running a low grade temperature for weeks and was very fatigued. Her breathing became labored with just the simplest activities and her dance teacher said she could no longer dance. I was getting calls at work to come pick her up from school by 10am because the school nurse knew she was not well. She began having pain in her throat and esophagus until she was no longer able to swallow solid foods. She was having pain in her joints and muscles, and her heart would race. This went on, getting progressively worse, until the first week of January, 2016 when Lily was admitted to the Children’s Hospital in Philadelphia, PA where she would remain for a week. Lily was seen by multiple teams of CHOP specialists. We were told that her condition was some sort of an “autoimmune response” to the virus and that the teams of doctors would be working together to form an “ongoing diagnosis.”
It has been many months of tests, doctors’ visits and procedures with each group of specialists eliminating all of the things on the list of possible conditions. The virus that triggered all of this response is no longer present in her system and we will never be able to identify that virus. Her blood work shows that her body is still in a very active battle fighting against itself.
We now have several pieces of the puzzle in her diagnosis. The MRI results of her brain revealed that part of her brain was damaged by the virus. The autonomic nervous system that automatically controls her heart rate, blood pressure & gastrointestinal motility, etc., is now malfunctioning. We waited three months to see a CHOP cardiologist in Brandywine, PA who is the top specialist in the nation for children with [POTS] postural orthostatic tachycardia syndrome. Even though her blood pressure is very low, her resting heart rate while seated falls between 100 -114 bpm. Then when she stands up and just stands perfectly still, her heart rate soars to 130+ beats per minute. This explains some of the severe fatigue and many of her other symptoms. Lily is now one of only 124 POTS pediatric cases in the CHOP network nationally. POTS is more common in adults and it is very rare in young children. Lily is now part of a national study group of pediatric POTS patients. Her cardiologist will be trying both conventional and nonconventional medications in different ‘cocktails’ in order to manage her symptoms. The success rate of complete remission in children Lily’s age is not high, but 75% of patients have some level of improvement. Her cardiologist said that Lily presents with symptoms that compare to an adult in congestive heart failure. Normal physical activity and even cognitive activity for any length of time causes what’s called “post exertion fatigue.” Lily is often completely exhausted for several days following even a small amount of activity, like playing a board game with her three siblings. She suffers with muscle and joint pain daily. It is a daily struggle, but Lily’s amazing cardiologist told Lily that he “will not give up” on her!
The endoscopies and colonoscopies performed by her GI doctor show there is severe inflammation and furrowing in her esophagus, stomach, & intestines. Twice she has had food lodge in her esophagus, so she cannot ever be left alone while eating. She drinks a lot of water with every mouthful of food in order to help push the food through the esophagus. She is only able to tolerate liquids and very soft foods even after many months on medications. She has had some significant improvement in the inflammation and we are very thankful for that! The GI specialist has told us however, “this will be a very long road.”
Lily was not well enough to return to school, and has been tutoring from home since January, 2016. She will continue throughout the summer on a twelve month educational plan that is now in place for her within a 504 plan. She is starting a physical therapy program five days per week at Virtua Hospital in Voorhees using something created specifically for pediatric POTS patients called the Dallas Protocol. Most of the exercises are done in a horizontal position and are increased over time at a very slow pace. One of our goals is to strengthen her muscles enough to allow her to return to school part time in the future without experiencing extreme post exertion fatigue. Any activity that puts too much stress on her organs while she is battling this autoimmune response could set us three steps back and land her back in the hospital. She has good days and not so good days, but we are staying positive and we cannot give up hope for a complete recovery!
I continue to work part time in a law firm, but caring for Lily’s needs is a full time job. Despite a court order to pay child support and alimony, my ex-husband has not worked since the first week of March. He has only come to visit Lily a few times in the last 6 months. This has been very emotionally difficult for our family, but especially for Lily. Our already challenging financial situation has become even more complicated. I have used every bit of my savings in order to keep paying the rent for our home and have been able to stay current with all of our bills until now. I receive a small amount of food stamps, but because I have a job I do not qualify for any other assistance. I am now in a position where I have to ask for help. If I work anymore hours at my job, I will be disqualified for our health insurance through the State of NJ. We absolutely cannot afford to lose Lily’s healthcare coverage, and I cannot depend on my ex-husband to provide healthcare for her.
I am humbly seeking help with my rent money as staying in our home is of paramount importance to me. My son is a senior at Haddon Township High School and it would be incredibly painful for me to have him switch schools for his final year. Many of you have already assisted us in numerous ways and it distresses me to have to ask for help so directly but I have gone through all of my savings and I’m not sure what else to do. Lily’s illness will most likely continue for years, not months, and paying my rent each month is my single biggest financial concern. The monetary goal I set will cover my rent for approximately 18 months. This would provide me more relief over my financial situation than you can imagine and will allow me to invest all of my emotional well-being on Lily.
My children and I have a very strong faith in our mighty God. He is faithful and will continue to heal Lily within His timing and within His perfect plan for her life. I believe that we are in the best of hands with all of the specialists at CHOP and I am confident that Lily is receiving the best care possible. But none of this has been easy and I am weary in this challenging season of our lives. As a single mother, the daily physical and emotional stresses are enormous. I am blessed to have the encouragement of our family, so many wonderful friends, and my church, Oaklyn Baptist! We are surrounded with prayer and much love. I will continue to keep you updated on Lily’s condition as we move forward. We still believe that we will someday have all of the pieces to the puzzle and have a complete diagnosis. We trust that Lily will be able to dance again someday and return to the stage in the musical theater that she so loves! Please continue to keep our entire family in your prayers. (#prayers4Lily)
Lily has always been a very happy, active little girl. She started every day with dancing & singing. That is why I gave her the nickname, “rainbows, sparkles & sunshine.” She has always been a child so full of joy, with a tremendous love for life! She was an excellent student at Rohrer Middle School in Haddon Township, NJ, making grades high enough to earn her a spot on the Principal’s List for academics in the 6th grade. She has been dancing in two dance classes a week for the last three years and has absolutely loved performing in several local musical theater productions. But all of that has now changed dramatically.
Lily returned to school after the virus last November, but was still running a low grade temperature for weeks and was very fatigued. Her breathing became labored with just the simplest activities and her dance teacher said she could no longer dance. I was getting calls at work to come pick her up from school by 10am because the school nurse knew she was not well. She began having pain in her throat and esophagus until she was no longer able to swallow solid foods. She was having pain in her joints and muscles, and her heart would race. This went on, getting progressively worse, until the first week of January, 2016 when Lily was admitted to the Children’s Hospital in Philadelphia, PA where she would remain for a week. Lily was seen by multiple teams of CHOP specialists. We were told that her condition was some sort of an “autoimmune response” to the virus and that the teams of doctors would be working together to form an “ongoing diagnosis.”
It has been many months of tests, doctors’ visits and procedures with each group of specialists eliminating all of the things on the list of possible conditions. The virus that triggered all of this response is no longer present in her system and we will never be able to identify that virus. Her blood work shows that her body is still in a very active battle fighting against itself.
We now have several pieces of the puzzle in her diagnosis. The MRI results of her brain revealed that part of her brain was damaged by the virus. The autonomic nervous system that automatically controls her heart rate, blood pressure & gastrointestinal motility, etc., is now malfunctioning. We waited three months to see a CHOP cardiologist in Brandywine, PA who is the top specialist in the nation for children with [POTS] postural orthostatic tachycardia syndrome. Even though her blood pressure is very low, her resting heart rate while seated falls between 100 -114 bpm. Then when she stands up and just stands perfectly still, her heart rate soars to 130+ beats per minute. This explains some of the severe fatigue and many of her other symptoms. Lily is now one of only 124 POTS pediatric cases in the CHOP network nationally. POTS is more common in adults and it is very rare in young children. Lily is now part of a national study group of pediatric POTS patients. Her cardiologist will be trying both conventional and nonconventional medications in different ‘cocktails’ in order to manage her symptoms. The success rate of complete remission in children Lily’s age is not high, but 75% of patients have some level of improvement. Her cardiologist said that Lily presents with symptoms that compare to an adult in congestive heart failure. Normal physical activity and even cognitive activity for any length of time causes what’s called “post exertion fatigue.” Lily is often completely exhausted for several days following even a small amount of activity, like playing a board game with her three siblings. She suffers with muscle and joint pain daily. It is a daily struggle, but Lily’s amazing cardiologist told Lily that he “will not give up” on her!
The endoscopies and colonoscopies performed by her GI doctor show there is severe inflammation and furrowing in her esophagus, stomach, & intestines. Twice she has had food lodge in her esophagus, so she cannot ever be left alone while eating. She drinks a lot of water with every mouthful of food in order to help push the food through the esophagus. She is only able to tolerate liquids and very soft foods even after many months on medications. She has had some significant improvement in the inflammation and we are very thankful for that! The GI specialist has told us however, “this will be a very long road.”
Lily was not well enough to return to school, and has been tutoring from home since January, 2016. She will continue throughout the summer on a twelve month educational plan that is now in place for her within a 504 plan. She is starting a physical therapy program five days per week at Virtua Hospital in Voorhees using something created specifically for pediatric POTS patients called the Dallas Protocol. Most of the exercises are done in a horizontal position and are increased over time at a very slow pace. One of our goals is to strengthen her muscles enough to allow her to return to school part time in the future without experiencing extreme post exertion fatigue. Any activity that puts too much stress on her organs while she is battling this autoimmune response could set us three steps back and land her back in the hospital. She has good days and not so good days, but we are staying positive and we cannot give up hope for a complete recovery!
I continue to work part time in a law firm, but caring for Lily’s needs is a full time job. Despite a court order to pay child support and alimony, my ex-husband has not worked since the first week of March. He has only come to visit Lily a few times in the last 6 months. This has been very emotionally difficult for our family, but especially for Lily. Our already challenging financial situation has become even more complicated. I have used every bit of my savings in order to keep paying the rent for our home and have been able to stay current with all of our bills until now. I receive a small amount of food stamps, but because I have a job I do not qualify for any other assistance. I am now in a position where I have to ask for help. If I work anymore hours at my job, I will be disqualified for our health insurance through the State of NJ. We absolutely cannot afford to lose Lily’s healthcare coverage, and I cannot depend on my ex-husband to provide healthcare for her.
I am humbly seeking help with my rent money as staying in our home is of paramount importance to me. My son is a senior at Haddon Township High School and it would be incredibly painful for me to have him switch schools for his final year. Many of you have already assisted us in numerous ways and it distresses me to have to ask for help so directly but I have gone through all of my savings and I’m not sure what else to do. Lily’s illness will most likely continue for years, not months, and paying my rent each month is my single biggest financial concern. The monetary goal I set will cover my rent for approximately 18 months. This would provide me more relief over my financial situation than you can imagine and will allow me to invest all of my emotional well-being on Lily.
My children and I have a very strong faith in our mighty God. He is faithful and will continue to heal Lily within His timing and within His perfect plan for her life. I believe that we are in the best of hands with all of the specialists at CHOP and I am confident that Lily is receiving the best care possible. But none of this has been easy and I am weary in this challenging season of our lives. As a single mother, the daily physical and emotional stresses are enormous. I am blessed to have the encouragement of our family, so many wonderful friends, and my church, Oaklyn Baptist! We are surrounded with prayer and much love. I will continue to keep you updated on Lily’s condition as we move forward. We still believe that we will someday have all of the pieces to the puzzle and have a complete diagnosis. We trust that Lily will be able to dance again someday and return to the stage in the musical theater that she so loves! Please continue to keep our entire family in your prayers. (#prayers4Lily)
Organizer
Jodi Gravener
Organizer
Collingswood, NJ
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