Sunday, May 23, 2010

HELPING LANCE HEAL

Dear Friends and Family of Lance,

We have written this letter to express a concern we have regarding Lance’s health. We have spoken with Amy about writing this because we see she is stretched beyond her means and it has been difficult for her to ask for help. Like most parents, she wants to believe she can raise her child without asking for assistance, but sometimes it does takes a village, especially with a sick child, so we are asking you to read this letter.

Lance has experienced many serious illnesses in his life, including Tourette's Syndrome (uncontrollable movements of his muscles and limbs called "tics"), and Celiac Disease, an autoimmune disease which can have serious consequences and has been responsible for many of his struggles including Sensory Integration Disorder and years of stomach, body and joint pain. Adding to the list, Lance was recently diagnosed with “PANDAS” (Pediatric Autoimmune Neurological Disorder Associated with Streptococcus infection), which is actually good news, as it has some similarities to Tourette's, but is curable! PANDAS is a strep infection that spreads to the brain, causing inflammation or encephalitis.

This happens from a person's inability to get rid of strep bacteria, following something like a simple strep throat, even with antibiotics. It spreads through the body as rheumatic fever, which Lance had at age 10, and can infect the heart, kidney, joints or other organs, which, in this case, it infects the brain causing uncontrollable tic movements and many of other symptoms that Lance has. Lance has been through numerous rounds of antibiotics and other medications to treat the strep but it is proving hard to get the rid of because his immune system is weak. Through a faulty mechanism, the antibodies his immune system is producing to attack the strep are mistakenly attacking his own brain.

It has taken well over 4 years to get the real diagnosis and true underlying reason why one day, Lance just woke up having tics and serious deterioration of his coordination.

Despite all this, Lance is an honor roll student, a drummer in a rock band, plays basketball and baseball, loves his guinea pigs and has his own radio show as a classic rock DJ on KOWS in Sonoma County. He just received a full 4-year scholarship to attend Sonoma Academy, the premier academic high school in our county. Lance is resilient and upbeat and funny and committed to living a great life in spite of deeply struggling with ongoing physical illness.

We are asking for your help. There is a cure for PANDAS! NIH and a growing number of physicians are treating PANDAS by administering intravenous immuno-globulins (an immune system protein that acts like antibodies) called IVIG. Each IVIG treatment costs $12,436 just for the medication alone, plus other miscellaneous expenses for the two-day intravenous therapy. Lance's case may require an additional treatment or even two over the course of a year, but we are focusing on raising just enough for the first treatment. There is an 85% chance he will not require a second treatment. The IVIG treatments are the only known cure for PANDAS, especially if treated early. If not treated, his condition will only continue to worsen. And since Lance has had this encephalitis for four years already, there is some urgency to treat him quickly while he is still well within the treatment window.

We are reaching out to you, Lance’s community, to contribute whatever amount is comfortable for you and/or help brainstorm ways to raise some funds. Lance's parents have already spent their entire life savings on years of medical therapies for Lance before finding out the true diagnosis. We need to source individuals and organizations who donate to situations like this. We just don’t know who they are. We hope that by “six degrees of separation” this letter finds its way into the hands of someone who knows someone who knows someone that can help. So please forward this letter to everyone you know, because they may have connections to an organization that donates money to worthy causes, like Lance's fund.

Thanks for taking the time to read this and we hope you and your family are doing well.

Please help us by donating, or by forwarding this information to anyone you think would be able to help, individuals or organizations.

Warmly,
Jody and Sue, Lance’s Godparents

PS For more information on PANDAS, see the sidebar on the right.