Thursday, January 12, 2012

Please help my friend's niece 15 year old LEXI!

Lexi is a beautiful 15 year old girl who lives in Calgary, Alberta Canada.  She has an EXTREMELY rare disease and desperately needs your help!  Read her story:

                                      Lexi is a beautiful 15 year old girl with a                             bone tumor in her skull. It causes her incredible pain. We are     here to support her and her family to get the care Lexi needs.

Lexi is a stunningly gorgeous 15 year old ballerina. Who loves nothing more than to spread her wings on stage. One of the most gentle souls I know Lexi always puts everyone before her.. Her outlook and smile are an inspiration to all.

Lexi has a rare bone tumor in her skull (5cmx7cm) that has caused an even more rare nerve dystrophy in her head called CRPS or RSD. Usually found in the arm or leg CRPS causes excruciating debilitating pain that is untouched by narcotics. With intense physio this can be treated in the arm or leg however there is no treatment for CRPS of the cranial nerves.

Lexi has multi system issues.. She is believed to have an undiagnosed mutation of the cyropyrin gene that has left her allergic to her internal organs. She becomes covered in painful rashes and struggles to take breaths. Her body spasms, her jaw locks. Her skin splits and bleeds. Every movement or trauma causes more pain.Because of the cryopyrin issue drugs like morphine and 90 percent of the drugs that would help her suffering cannot be given as they compound the problem. Her lips swell so much they split open. Her hearing is so sensitive breathing around her makes her cry. She can no longer eat and is tube fed...even with the tube feed she continued to lose weight and at 102 lbs she is now on intravenous feeds running the risk of liver damage. No one in alberta knows how to diagnose or treat Lexi so we have spent a year trying to get help and really only putting out fires or what we call symptom chasing. She is so complex we are left just trying to keep her alive. We have exhausted ALL options at Alberta Children's Hospital. We are currently awaiting a transfer to toronto sick kids to meet with the specialists and genetic immunologists who might be able to help her. In the meantime she suffers incredibly. I have not really been able to work since may and her insurance provider removed her. She does not qualify for health insurance as she has been deemed critical. Since when I am working I do quite well she does not qualify for govt assistance. The govt drug programs do not cover most of her drugs and now even the hospital doesn't cover some of them. I have exhausted my savings and the bills keep coming. We aren't even sure what the bill for the transfer to toronto will be as her testing flights nurses etc may not even be covered. With med bills well into the thousands each month I am running out of options. I hear everyday what can I do to me save her. Even the comforts she needs like the softest of blankets and massage therapists that will come to the hosp ...all add up. Even trying to pay our reg bills with no income is becoming a struggle. Childrens cancer is the most funded area... Millions upon millions are donated each year. Diseases like lexi's get nothing...the rest of the hosp gets nothing. These kids die. This is a kid that would do anything and everything to make someone smile or ease their pain for a minute...please help me to continue to do it for her.

Please visit her Facebook page right now and donate as much as you can!  She is fighting for her life!  

1 Blabs:

CRPS News said...

So much pain at such a young age. How's Lexi doing? Hope she's better now.
crps specialist

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