Kallie's Battle with Evans Syndrome
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Kallie Burgess is our 3 year old youngest daughter that we adopted from birth. She is our little princess and is such a little sweet heart and is dearly loved by all that meet her and are a part of her life. She has been recently diagnosed with Evans Syndrome along with having a genetic condition known as DiGeorge syndrome. Kallie's medical problems began around 6 months old when she was failing to meet certain milestones and had very low muscle tone. After an MRI and genetic testing, we found out Kallie had a genetic disorder known as Di George syndrome. It caused her to have many issues as an infant with the main one being a submucosal cleft palate. When this is present, the muscles of the soft palate may not function properly and the individual is at risk for speech problems, middle ear disease, and swallowing difficulties. This will require surgery at some point to correct and will also be a very risky surgery for her due to the fact that the Di George syndrome has caused her carotid artery to run up the back of her throat instead of on the sides. The second main way Di George has impacted Kallie is that she is immune compromised with episodes of neutropenia on and off throughout her life along with many, many infections and illnesses. She is followed closely by a team of ENT's , immunologists, cardiologists, and geneticists.
On Christmas Day, 2014, Kallie began bleeding from many blood blisters in her mouth and had bruises all over her body from any place that she had been touched, carried, or even where her shoes were touching her ankles and feet. After rushing her to the hospital, they determined her platelets were down to 3,000 (normal is 150,000). She was immediately admitted and they administered her first IViG treatment. At the time, there was hope this was a one time occurance of ITP (Idiopathic thrombocytopenic purpura (ITP), also known as immune thrombocytopenia). She was now being assigned to a team of Hematologists as well as her other doctors. After following Kallie closely her counts fell drastically again in less than 2 weeks. This time all of her blood levels across the board were affected and very low (WBC, ANC, Hemoglobin, ANC, platelets). They admitted her to the hospital again for a double dose of IViG, a platelett transfusion, and a double bone marrow biopsy. When the results from the biopsy returned, Kallie was officially diagnosed with Evan's Syndrome (an autoimmune disorder) because she tested positive for antibodies against her neutrophils and also against her platelets. Basically her own body is destroying these at a fast pace. Within a few weeks, Kallie spiked a 104 fever along with sever neutropenia and an ANC of only 80 (normal is over 2,000) she was admitted once again to the hospital for over a week and administered IV antibiotics, 2 rounds of IViG, and had multiple blood cultures and tests run again. This time, her Coombs test came back positive, meaning that her body has now developed an antibody to her red blood cells as well. This means all parts of her blood are being attacked and destroyed. Kallie has become the center of discussion among the Immunologists and Hematologists at Texas Childrens as they try to determine the best treatment for her. The IViG treatments are just a temporary fix. The best treatment is Rituximab, but because she has Di George syndrome, they are unsure about using it because it will wipe out all of her B-Cells, and her T-Cells are already affected due to the DiGeorge. In children without DiGeorge, their B-Cells would come back rather quickly after stopping the treatment, but they are unsure how fast Kallie's would respond and come back. Due to her low platelet count and severe neutropenia, she has also not been able to regularly attend the PPCD program through our local school where she was receiving valuable lessons on how to communicate better, and speech therapy as well. At this time, our insurance has denied her IViG treatment for Christmas Day, 2014 and has also completely denied a few more of her labs and treatments of IViG in 2015. Each treatment of IViG costs around $6,500 and she just finished up treatment number 8. She will continue to receive these treatments every 2-3 weeks. If these treaments begin to not work at all, then they will have to move on to Rituximab or removal of her spleen or a bone marrow transplant. Her total medical costs since January 1st is close to $160,000. Our portion of her current medical bills for 2015 that insurance is either not covering or is part of our out-of-pocket max is around $15,000 in addition to the not covered expense from Christmas 2014 of $6,500. We are on our third appeal to Blue Cross Blue Shield for these charges but are still being denied. At the urging of some of our friends and family, we finally decided to start a Go Fund Me account. Prayers are what we are asking for above everything else. Anything you would be willing to donate would be greatly appreciated and will go directly to paying for Kallies medical bills, treatments, therapies, etc that she requires to beat this. She is our little pride and joy and has two big sisters that absolutely adore her as well.
On Christmas Day, 2014, Kallie began bleeding from many blood blisters in her mouth and had bruises all over her body from any place that she had been touched, carried, or even where her shoes were touching her ankles and feet. After rushing her to the hospital, they determined her platelets were down to 3,000 (normal is 150,000). She was immediately admitted and they administered her first IViG treatment. At the time, there was hope this was a one time occurance of ITP (Idiopathic thrombocytopenic purpura (ITP), also known as immune thrombocytopenia). She was now being assigned to a team of Hematologists as well as her other doctors. After following Kallie closely her counts fell drastically again in less than 2 weeks. This time all of her blood levels across the board were affected and very low (WBC, ANC, Hemoglobin, ANC, platelets). They admitted her to the hospital again for a double dose of IViG, a platelett transfusion, and a double bone marrow biopsy. When the results from the biopsy returned, Kallie was officially diagnosed with Evan's Syndrome (an autoimmune disorder) because she tested positive for antibodies against her neutrophils and also against her platelets. Basically her own body is destroying these at a fast pace. Within a few weeks, Kallie spiked a 104 fever along with sever neutropenia and an ANC of only 80 (normal is over 2,000) she was admitted once again to the hospital for over a week and administered IV antibiotics, 2 rounds of IViG, and had multiple blood cultures and tests run again. This time, her Coombs test came back positive, meaning that her body has now developed an antibody to her red blood cells as well. This means all parts of her blood are being attacked and destroyed. Kallie has become the center of discussion among the Immunologists and Hematologists at Texas Childrens as they try to determine the best treatment for her. The IViG treatments are just a temporary fix. The best treatment is Rituximab, but because she has Di George syndrome, they are unsure about using it because it will wipe out all of her B-Cells, and her T-Cells are already affected due to the DiGeorge. In children without DiGeorge, their B-Cells would come back rather quickly after stopping the treatment, but they are unsure how fast Kallie's would respond and come back. Due to her low platelet count and severe neutropenia, she has also not been able to regularly attend the PPCD program through our local school where she was receiving valuable lessons on how to communicate better, and speech therapy as well. At this time, our insurance has denied her IViG treatment for Christmas Day, 2014 and has also completely denied a few more of her labs and treatments of IViG in 2015. Each treatment of IViG costs around $6,500 and she just finished up treatment number 8. She will continue to receive these treatments every 2-3 weeks. If these treaments begin to not work at all, then they will have to move on to Rituximab or removal of her spleen or a bone marrow transplant. Her total medical costs since January 1st is close to $160,000. Our portion of her current medical bills for 2015 that insurance is either not covering or is part of our out-of-pocket max is around $15,000 in addition to the not covered expense from Christmas 2014 of $6,500. We are on our third appeal to Blue Cross Blue Shield for these charges but are still being denied. At the urging of some of our friends and family, we finally decided to start a Go Fund Me account. Prayers are what we are asking for above everything else. Anything you would be willing to donate would be greatly appreciated and will go directly to paying for Kallies medical bills, treatments, therapies, etc that she requires to beat this. She is our little pride and joy and has two big sisters that absolutely adore her as well.
Organizer
Shelly Burgess
Organizer
Lakewood Forest, TX
