Hi everyone, we are Jon and Valerie Levine and we have 2 beautiful children, Andrew who is 4 and Abigail who is 5. We thank god everyday that Andrew is healthy and we wish we could say the same about our daughter Abigail.
When Abigail was 4 years old she woke up one morning and was so swollen that we didn't even recognize her. After hours in the emergency room of Childrens Hospital Abigail was diagnosed with Nephrotic Syndrome. The doctors told us that this is a Chronic Kidney condition and that there is no cure, but 90% of kids go into remission with a 6 to 8 week course of oral Prednisolone.
Abigail was not one of those kids! That's really when our nightmare began!
It has been a year and a half and the doctors, as wonderful as they are, can still not get her into remission. She has been through so much, 2 Kidney Biopsies, 25 weeks of I.V. Solumedral, a 16 week course of Chemo-Therapy and has spent countless days and nights in Childrens Hospital.
There are several forms of Nephrotic Syndrome, some are more severe than others. Abigail has not yet responded to any of the medications and at times she is very, very sick, the longer this continues the worse it could be for her!
Her team of Kidney Specialists say that she is literally one in a million! We don't know what is going to happen next! The doctors check her Kidney function every 2 weeks and anything is possible. She could go into renal failure at anytime but no one knows if this will happen or when this could happen. With this disease everthing could happen very fast and sometimes the complications to this disease are worse than the disease itself!
Here is Abigail's current condition, she is on a new medication, it is an Anti Rejection Drug called Prograf. The doctors are hoping that this will get her into remission.She is also on Enalipril for Kidney scaring and Prednisolone to reduce swelling. Needless to say she is a very medicated little girl. The Prednisolone makes her very emotional, very emotional. She is sweet and lovable and is the Bravest little girl I have ever met. Abigail goes to Childrens Hospital once a week to get her blood levels checked and they monitor her very closely. Unfortunatly this has become a way of life for all of us. Nothing is going to change unless someone finds a cure for this terrible disease. We pray everyday that someone will save our precious little girl and end all of her suffering!
Abigail has just started Kindergarten and she asks me everyday if her Kidneys are better yet. That breaks my heart and I hope one day that I can say " Yes baby ,they are better!"
I would really like to thank all of you for taking the time to read this and letting our family (especially Abigail )into your hearts. Anyone who would like to walk on September 30th please register and join our team! We are Team Princess Abigail. If you can't join us than any contribution to the National Kidney Foundation in Abigails name is greatly appreciated! Just click Sponsor me and make your donation right on line! The contribution you make today could save Abigail or many other people that are suffering with a Kidney Condition!! God Bless all of you and Thanks again!
The Levine Family. Jon, Valerie, Abigail and Andrew!
As I sit here in tears I would also like to give a special thanks to my good friend Yvonne for supporting me in this,creating our team,"Princess Abigail" and pushing me to tell my story. It wasn't easy. I love you!