never, never, never give up!
Our journey has been long .
Dozens of specialists during the last 12 years.... symptoms started at a very young age ...and Rayne's condition continued to deteriorate and then one night, she just couldn't walk. Excruciating pain, stiff joints, painful bleeding mouth ulcers, tremors, weakness, we soon learned was a flare.
Flares like this repeated over and over on a weekly basis.
Rayne continues with increasing episodes of flares and with each flare there is a chance for real damage to her vital organs.
July-2013: We were blessed to be granted a consultation with Dr. Yazici - a world renowned Rheumatologist (NYU) Behcet's/Vasulitis disease research clinic. Although he did diagnose Rayne ..however, he does not treat children and so our search for help continued.
Behcet's /Vasculitis is rare in the U.S. and even more rare in children. We needed help and we needed it fast.
Our search for a doctor who was knowledgeable in the diagnosing and treatment of Behcet's/Vasculitis in young children has been long and costly. Ultimately, (luckily), we were directed to Dr Lehman, Chief Pediatric Rheumatologist and a pioneer in the research and treatment of Vasculitis in children of all ages.
His protocols have proved to be promising in children. There is real hope for a possible remission, or at least prevent the inevitable damage to Rayne's vital organs. His protocol/ regimen consists of research many research medications (including possible imunosuppressive interlukin I and chemotherapy ). However, at this time, we are happy to say Rayne is managing her illness successfully...
Rayne lives this roller coaster illness, sometimes teetering on the edge of life.. in 2016 we almost lost her.
With true warrior spirit, she pushes and fights to live a normal life... Now, (after 4 years of home schooling), she has returned to school, more precisely, High School! She continues to fight...she will not give up... and we continue to fight with her...for her...
But, to put it plainly...she has a long journey ahead...
We are thankful to the angels that surround this fighter... family, friends, as well as her school.
We hope you will partner with us to help Rayne whether in prayer, or a by helping us raise awareness..
Believe me, It is very much appreciated.
From our grateful heart to yours -Thank you for your support, your encouragement and your prayers.
2020 SWEET SIXTEEN!! High Honor Roll Student! MAY 20TH 2010....So many updates!!