Monday, May 30, 2011

LymeLight Foundation: First Foundation to Offer Treatment Grants for Patients with Lyme

By Candice, SpiroChicks Contributor

SpiroChicks are thrilled to announce the newly formed LymeLight Foundation. A foundation that focuses on treatment grants for children with Late State Lyme Disease. 





Born a Soldier

Most people look back on their childhood and have memories full of days in the park, school field trips, pool parties and play dates. Most have photo albums documenting their teenage and college years as well, with pictures of proms, big football games, and graduation ceremonies.

Yet, a small portion of youth are not that fortunate, not because they don't have the same opportunities that their peers have, but because they are not well enough to take them.

While many children are out with their friends, practicing sports, or working on big school projects, children with Late Stage Lyme Disease are at home on the couch. They aren't munching on a bowl of popcorn and doing homework or watching TV like the average American youth, but they are likely either hooked up to an IV pole or taking their third nap of the day.

Kids and young adults infected with Lyme have not only been robbed of their physical strength, but they have been stripped of their opportunity to truly be young. They are launched into a world where they are forced to be strong, despite the fact that their bodies are weak. They make sacrifices adults would have a hard time making, and face obstacles and mountains that seem to tower above them. Children with Lyme Disease are born soldiers.

I know this first hand. I'm 22 years old, and I'm entrenched in year 6 of my battle with Lyme Disease. I was only 16 years old when I fell ill and began my fight for health.

I have the unique perspective of a patient who has been infected as both a teen and a young adult. I know what it's like to watch your parents struggle endlessly to keep up with your medical bills, and burn out as they try to care for you physically and meet your extensive needs. I know what it's like to look at your parents and feel responsible for the bags under their eyes and the grey hairs on their head. Yet, I also know what it's like to then grow up and be out on your own as a sick young adult. I know what it's like to be incredibly ill, and have no job experience, savings, college degree, or significant other to rely on, yet face caring for yourself both physically and financially. 

I remember what it felt like at age 17, to lay undiagnosed in a medical gown in a hospital bed, knowing that it was the first day of of my senior year of high school. I knew that I should have been pulling up in the school's parking lot in a car that said "Class of '07" across the rear window. Instead, I was hooked to an IV, surrounded by nurses and beeping machines. I also now know what it's like to now be diagnosed and in treatment, and to watch friends graduate from college and move on with their lives as they reach for their dreams, while I lay stagnantly on my bed. When you fall ill during your youth and miss out on those major stepping stones and building blocks in life, such accomplishments seem so far out of reach. The only thing that allows us to keep hanging on is the notion that treatment is going to get us there. We know that if we stick out the treacherous treatment that Late Stage Lyme requires, we'll be able to grasp those opportunities once again.

Yet, due to the politics surrounding the disease, we're often stripped of the treatment and care that we need to ensure that we have the future that we dream for and deserve. The IDSA and treatment guidelines make it literally impossible to receive insurance-covered treatment. Necessary, life sustaining treatment for Lyme patients has become a commodity that we all struggle painstakingly to afford. Sadly, many cannot.

The LymeLight Foundation

Most organizations and foundations in support of Lyme Disease are admirably focused on raising awareness or raising funds for research. Sadly despite the fact that Lyme can easily bankrupt a patient and their family, no organization to date offers grants to help with treatment costs. I am honored to announce that the newly established LymeLight Foundation has set out to raise funds for treatment, particularly for children fighting the disease.

LymeLight Foundation was founded by the benevolent families of two young Lyme patients. Sarah and Maggie are both in their early 20s, and have displayed immense strength and courage as they've fought the disease over the years. Maggie, who has victoriously battled Lyme for 10 years, came up with LymeLight Foundation's concept. Sarah's family was inspired by Sarah's IV nurse who had a similar idea, and they eventually teamed up with Maggie's family and a few other helpers to materialize the dream. With extensive effort, Scott and Phyllis Bedford worked with Michael and Bonnie Moe to create the official LymeLight Foundation. Their mission is to reach out and make treatment available to young struggling Lyme patients. 

LymeLight Foundation will sponsor several fundraising events throughout the year with the mission of raising funds to enable children with Lyme disease to receive proper treatment and medication. -Phyllis Bedford 

LymeLight Foundation will work to involve the community in raising funds through various creative fundraising events. They plan to host theatre nights, fashion shows, and art nights, in hope to raise enough to provide relief for children battling the disease. Their first event will be hosted by Maggie's subdivision of the Foundation, LymeLight Productions.

LymeLight Foundation's first Fundraiser, and LymeLight Productions first show "You're a Good Man, Charlie Brown" will have an official opening night on June 10th  at the World Class Campbell Center at Sacred Heart Prep in Atherton, California. Maggie, who has now succeeded in becoming a student in Ithaca College's theater program, has recruited 5 of her incredibly talented peers to join her in the cast. Please visit LymeLight Foundation's website to purchase your tickets, but to also find out how you can sponsor the event. Be sure to take a look at the special opportunities that are exclusively offered to sponsors, and if you are a Lyme patient yourself, please seek out the information for the matinee show on the 11th. It is free to Lyme patients and their families. 

Please consider sponsoring or donating to the cause. Treatment need right now is greater than most can imagine. By becoming a sponsor or making a donation, you could be handing a child back a piece of their future. You could be the one who reignites their light at the end of the tunnel. 


Details on LymeLight Foundation's mission or their upcoming production as well as information on how to donate or become a sponsor can be found at their official website, http://www.LymeLightfoundation.org