Life Saving Bone Marrow Transplant
Donation protected
At 21/2 we found Lauren asleep in a pool of her own blood, her sister sleeping besides her was also covered with Lauren's blood.
Rushing her to the hospital, Lauren underwent a number of tests trying to diagnose what could have impacted her platelet count so severely. That was the first time we had been told "Lauren might not make it". Unfortunately, that statement has continued to haunt her all of her life.
At age 5, she was officially diagnosed with Common Variable Immunodeficiency (CVID). Not knowing what this disease was capable of doing to Lauren's immune systems, I ignorantly commented to the doctor,"at least she doesn't have cancer, we could never handle that" I was quickly corrected and advised this was worse then cancer. "Cancer we can treat and cure, with Lauren we can only experiment with treatments and hope they temporarily work." This UCLA doctor was the first doctor to tell us "Your daughter is going to die, there is no maybe, and to mentally prepare for her death". He predicted she would never make it to the age 11.
Lauren is now 16 years old, has spent over 25% of her life hospitalized undergoing numerous surgeries, treatments, biopsys, aspirations, and is still on weekly IV treatments. Within the 11 years of diagnosis she now has an Autosomal recessive disease, Lympho Granulomatous, Hepatomegaly, Chronic Obstructive Pulmonary Disease, Vitiligo, Asthma, Osteoperosis, Fungal Pnemonia, Sinusitis, and other immune related complications.
Thanks to Children's Hospital (CHOC) Lauren has been able to live a fairly normal and active life. However as her body continues to deteriorate her lung diseases continue to flourish. Up until recently, Lauren has always been told there is no cure for her diseases and she would either die of pneumonia or suffocation.
Four years ago, due to this extremely rare disease, Lauren began treatments at the National Institute of Health (NIH) in Bethesda, Maryland. In addition to being treated weekly at CHOC, she now is being hospitalized at NIH yearly. Through intense research, it has been discovered that Lauren is the only individual nationwide that has this specific disease and to the severity that she has it.
NIH has recommended an immune bone marrow transplant, advising her the complications due to the fact there has never been another transplant like this ever done to any individual. Due to her compromised immune system, this procedure is extremely dangerous and all other bone marrow specialists world wide are trying to encourage her to wait for at least 6 months due to the tremendous risk. Even though this procedure may end her young life or cause more damage then what her body has and continues to endure, Lauren believes she has no other options. She is willing to wait the six months in order to experiment with additional IV medications in hopes that these meds will make her lungs stronger for the transplant. Lauren told us, "she wants to live, not die and this is the only way she might be cured." She knows her family and friends are having a very difficult time with the upcoming transplant, but she so bravely shared ....
"At Some point, you have to realize that some people can stay in your Heart, but not in your Life."
Please help us fund the upcoming costs associated with her transplant, pre and post care included. We all thank you from the bottom of our hearts!
Rushing her to the hospital, Lauren underwent a number of tests trying to diagnose what could have impacted her platelet count so severely. That was the first time we had been told "Lauren might not make it". Unfortunately, that statement has continued to haunt her all of her life.
At age 5, she was officially diagnosed with Common Variable Immunodeficiency (CVID). Not knowing what this disease was capable of doing to Lauren's immune systems, I ignorantly commented to the doctor,"at least she doesn't have cancer, we could never handle that" I was quickly corrected and advised this was worse then cancer. "Cancer we can treat and cure, with Lauren we can only experiment with treatments and hope they temporarily work." This UCLA doctor was the first doctor to tell us "Your daughter is going to die, there is no maybe, and to mentally prepare for her death". He predicted she would never make it to the age 11.
Lauren is now 16 years old, has spent over 25% of her life hospitalized undergoing numerous surgeries, treatments, biopsys, aspirations, and is still on weekly IV treatments. Within the 11 years of diagnosis she now has an Autosomal recessive disease, Lympho Granulomatous, Hepatomegaly, Chronic Obstructive Pulmonary Disease, Vitiligo, Asthma, Osteoperosis, Fungal Pnemonia, Sinusitis, and other immune related complications.
Thanks to Children's Hospital (CHOC) Lauren has been able to live a fairly normal and active life. However as her body continues to deteriorate her lung diseases continue to flourish. Up until recently, Lauren has always been told there is no cure for her diseases and she would either die of pneumonia or suffocation.
Four years ago, due to this extremely rare disease, Lauren began treatments at the National Institute of Health (NIH) in Bethesda, Maryland. In addition to being treated weekly at CHOC, she now is being hospitalized at NIH yearly. Through intense research, it has been discovered that Lauren is the only individual nationwide that has this specific disease and to the severity that she has it.
NIH has recommended an immune bone marrow transplant, advising her the complications due to the fact there has never been another transplant like this ever done to any individual. Due to her compromised immune system, this procedure is extremely dangerous and all other bone marrow specialists world wide are trying to encourage her to wait for at least 6 months due to the tremendous risk. Even though this procedure may end her young life or cause more damage then what her body has and continues to endure, Lauren believes she has no other options. She is willing to wait the six months in order to experiment with additional IV medications in hopes that these meds will make her lungs stronger for the transplant. Lauren told us, "she wants to live, not die and this is the only way she might be cured." She knows her family and friends are having a very difficult time with the upcoming transplant, but she so bravely shared ....
"At Some point, you have to realize that some people can stay in your Heart, but not in your Life."
Please help us fund the upcoming costs associated with her transplant, pre and post care included. We all thank you from the bottom of our hearts!
Organizer
Cris Piscopo Kyriakidis
Organizer
Mission Viejo, CA
