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 Post subject: Heather's story
PostPosted: Thu May 08, 2008 8:25 pm 
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Heather “Makes-A-Wish” for Lyme Disease Research

Story by Dawn Irons

"A dream is a wish
your heart makes when you are fast asleep."
-from Walt Disney's Cinderella

Dreams are the hope of childhood fantasies. They come in all shapes and sizes. The Make-A-Wish foundation is an organization that has devoted itself to chronically ill children and helping to make their wishes come true. Many of the children Make-A-Wish has granted wishes to had Disney World at the top of their list. Disney is the master-creator of wide-eyed wonderment of children across the world. But on this particular occasion, the Make-A-Wish Foundation granted a wish to a girl who had her hopes and dreams set far beyond the likes of Disney World.

Heather, a 17 year old girl from Pennsylvania is a beautiful child of God, as is shown through her generous spirit of ultimately giving her wish away to increase awareness of this tragic disease that affects so many.

Heather is battling Chronic Disseminated Late Stage Lyme Disease. She
was granted a wish and invited to bring her fashion designs from paper to life at the Pure Fashion Runway Program in Atlanta GA. Separate from and following the wish and in cooperation with Pure Fashion and the Lyme Disease Association, four of the formals that Heather designed will be auctioned off with the proceeds to benefit Lyme Disease research.

As a young Christian woman, Heather has a passion to inspire teen girls to wear modest and yet fashionable clothing.

The Make-A-Wish foundation worked together with Pure Fashion to make Heather's wish come true. Pure Fashion and "The Modesty Movement" have been making headlines around the world. They desire to change our culture "one outfit at a time".
According to their website, "Pure Fashion is an international faith-based program designed for girls 14-18 to help young women re-discover and re-affirm their innate value and authentic femininity. "Pure Fashion is a character formation program that enhances not only a young woman's external appearance, but more importantly, her interior beauty and balanced self-confidence."

Heather has not had an easy road where her health is concerned. The Lyme disease became (has been) progressive and degenerative when complications from years of mis-diagnosis enabled the Lyme to disseminate deeply into her cells. The result threatened the quality of her life and has left her seriously immune-compromised and neurologically challenged. She is at this time, drug resistant and is now battling her Lyme on an all natural herbal antibiotic and immune rebuilding protocol, under the careful direction of a licensed, highly trained physician of naturopathic medicine. Her conventional/ integrative physicians support this decision and her team of doctors have communicated with each other in the management and care of her Lyme to ensure no contraindications and a high standard of care. The family is grateful for the integrity and quality of their medical team. Just prior to her leaving for her Make-A-Wish weekend, Heather's dad and mom, Barry and Diana, briefly described some of the teens symptoms.

"Heather has just battled through seven weeks of the latest relapse of Bartonella, one of the difficult Lyme co-infections. During this time she suffered intracranial
swelling which induced encephalitis in her brain. This aggravated the cognitive impairment, short term memory loss, musculoskeletal and neurological pain to mention a few. Her pain levels had climaxed to a point of such nausea and vomiting that she dehydrated. The exhaustion is indescribable. Our protocol includes IV infusions of micronutrients to replenish, re-hydrate when necessary, and flush the toxins from her brain and liver. When the "sun shines" on a good day, Heather runs forward and does not look back."

Barry and Diana consulted with Heather's medical team prior to leaving. Barry said, "Each specialist is fully aware of the challenges and potentials. They did not withhold acknowledging that this was a test." Because there was a medical plan in place in Atlanta, they were encouraged to go. "They wanted her to enjoy this time in whatever way possible" said her Dad.

“Our confidence, and the doctor’s, was affirmed when we were able to arrange for special medical care in Atlanta in the event of a need. Because Heather has such severe reactions to the drugs, we sought and found an integrated medical team who was available to us once we arrived in Georgia.

“Lyme symptoms, like those of most late stage Lyme patients can rapidly be debilitating, so this gifted team who treated Lyme much like our own team was a God-send. When the medical director in Georgia heard Heather was coming; he was gracious to offer the services of his clinic. On his own time, he came to the World Congress Center to meet Heather and her parents. He was also concerned and wanted to know how she was managing. "He is a wonderful man of faith, a Daddy and a wise physician. He understands the complications of this disease when it is in its later stages. This was a HUGE blessing and comfort for our family.

"With all due respect, so many of our primary care physicians, and definitely hospitals, are not properly equipped to treat late stage Lyme.

"If there is no known tick bite or obvious 'bulls eye' rash, Lyme can be missed. Primary care physicians are forced to use insufficient testing on the frontlines. Lyme is a clinical diagnosis backed up by labs. There is mass confusion in the medical community that the CDC surveillance criterion for Lyme is intended for diagnostics; but this is not true. The CDC is clear about this, yet the insurance industry and a majority of physicians are not aware of anything different until they find themselves personally affected or see a growing number of refractory patients, misdiagnosed yet residing in an endemic region. If inadequate testing and outdated protocols are the standard of care, it can compromise the future and life of the patient," explained Heather's mom.

She further shared, "This is why we are committed to promoting prevention and awareness. Politics have caused a division in the standard of treatment, a delay in an emergent need for highly specified diagnostics and proven treatment protocols. Our doctors need the appropriate tools to be able to care for their Lyme patients. The International Lyme and Associated Diseases Society of physicians are working to bring science to the forefront for these very reasons.

"Turn the Corner Foundation http://www.turnthecorner .org provides grant funding for this education. Health care professionals are now being trained around the world to recognize and treat this disease successfully; bringing relief to the many that may have lost hope for a pain-free future because of Lyme disease. The mission of TTC is to support research, education, awareness and innovative treatments for Lyme disease and other tick-borne diseases"

"We don't know exactly how I became infected with Lyme," said Heather, "but my
doctors believe it is highly likely that I could have been born with it, having it passed on by my mother during pregnancy, although, I have also had tick bites over the years beginning when I was very little. We do not know for sure yet. We only know that I have been sick since I was born.

"What I do know is that only through Jesus Christ could I have made it as far as I have.
He has brought people into my life to encourage me and He is always with me. I know I can turn to Him for strength and also share with Him the joys. If I had to do it all over again - to go through the incredible pain I now know - and all that is still being impacted, I probably would.

"I have matured spiritually SO much. I have been able to share my love and hope with new friends all over the U.S., who are also going through the same thing I am."

Heather is quick to remind you, "Even though I am in this battle, Lyme disease is not my identity. My name is Heather and I am Christ's child."

Heather shared from the heart about her friend Greta who accompanied her to the fashion show. "Greta is my dear friend who has been one of those special people who you feel you can share anything with and also be challenged in your walk. I've been blessed by our conversations and I appreciate how we both are able to really 'see' each other. She's one of those dear friends, who, when I'm having a rough day and she is nearby, and I reply with "I'm fine" can say, "GREAT! Now, how are you REALLY feeling?" I've appreciated her grace and strength in her faith walk. I was beyond excited that I could share that day with Greta. I think she is one of my few teenage friends who encourage my free spirit."

In answer to Pure Fashion's Mrs. Boyle and Mrs. Sharman's question of what message Heather would want to convey to young women, she responded, "The message that I would like to encourage in all girls is that you can have fun and play with fashion and still be modest. The reason I choose to be modest is because God says we are His temple. The Lord calls us to encourage our brothers in Christ, not tempt them. Beauty and fashion are two totally different things. Beauty will come in the way you hold yourself and how you talk to others. True beauty is about our character and a reflection of who we are on the inside. Fashion is just an expression of things you like. It will often reflect your personality. But what you choose to wear will not define how beautiful you are.

"I like to compliment and help create curves to flatter someone's shape without compromising or exploiting them. It's about beauty and being feminine vs. flaunting ourselves and being immodest. I like looking at high fashion dramatic pieces and re-creating them to reflect a person's character and every day classy fashion that encourages unique individualism."

Through all of her extraordinary trials, Heather looks for opportunities to share her faith with both Christians and people of other faiths and cultures.

"1 Timothy 4:12 tells me: 'Don't let anyone look down on you because you are young, but set an example for the believers in speech, in life, in love, in faith and in purity.'"
Heather has a maturity and strength that is uncommon for someone of her age. She challenges other people to look beyond their circumstances.

"What would you do if you found yourself, or had a friend nearby, who suddenly found their selves suffering for Christ? Would you be ready to "Let Go" and trade in your sorrows for trust and guidance? Could you help someone else if they were the ones called into the fire? Habakkuk 3:19 says: 'The Lord God gives me my strength. He makes me like a deer, which does not stumble. He leads me safely on the steep mountains.'

"Harriet Beecher Stowe said 'Never give up, for that is just the place and time that the tide will turn'. I'm going to win my battle against Lyme disease; because 'I've got my eye on the goal, where God is beckoning us onward to Jesus.' I'm off and running and I'm not turning back." (Philippians 4:13).

Heather further wanted to extend a sincere "Thank You" to the Make-A-Wish Foundation and all the people that worked together to help make her dream a possibility.

"I felt so blessed working with Mrs. Sharman, Mrs. Boyle and their beautiful models and assistants. I was blessed by two very special seamstresses, Miss Colleen and Miss Erin, who helped take my designs from paper to reality," shared Heather.
Working with the Pure Fashion team was an experience that Heather will never forget. She hopes that the money she raises through the Ebay online charity auction of her designs, during the month of May will be one step forward into the advancement of much needed research into chronic Lyme disease.

When Heather's mom asked her what her hopes and expectations were regarding the auction Heather said, "I want a cure so that other children and teens never have to suffer the way my Lyme friends and I have."

Heather will be making a formal presentation of the proceeds earned from the auction (to include one generous, private contribution so far) during a first-time scientific forum in South Central PA.

In cooperation with the Lyme Disease Association, highly respected, teaching Lyme specialists will be invited to Shippensburg PA, in August to bring a message of prevention, education and awareness to physicians and families who are planning to travel from various regions across the state and as far as MD, W.VA, TN, NC and beyond. For details regarding the auction and the forum, go to www.

The LDA is dedicated to Lyme disease education, prevention, and raising research dollars. About ninety-six cents of every dollar raised by the Lyme Disease Association has been used on programs. In its search for a cure for chronic Lyme, the LDA has already funded dozens of research projects coast to coast through researchers at institutions such as Columbia University College of Physicians & Surgeons, NJ Medical School (UMDNJ), Fox Chase Cancer Center, University of California, Davis, and University of Pennsylvania. Some of the research has been featured in peer-reviewed journals, such as Journal of the American Medical Association (JAMA), The Proceedings of the National Academy of
Science, The Psychiatric Clinics of North America, Infection, Journal of Neuropsychiatry and Clinical Neurosciences, JSTBD, Journal of Clinical Microbiology, Journal of International Neuropsychological Society, and Infection and Immunology.

Very significant genome work initially funded by LDA has shown that different strains of Borrelia have the ability to exchange genetic material among themselves, a trait greatly benefiting their survival and probably confounding the body's ability to eradicate the organism.

As I was completing my work on this article, I was driving home the other day and I heard a song on the radio. It reminded me of Heather and her wish. It reminded me of all the parents who have children that fight for their lives on a daily basis...and how precious a gift the time is we get to spend with these children. The song was called "Cinderella" by Steven Curtis Chapman. I will share some of the lyrics here as it is quite fitting to end this story of a real life Cinderella and her dream come true...

She spins and she sways to
whatever song plays,
Without a care in the world.
And I'm sittin' here
wearin' the weight of the world on my shoulders.
It's been a long day and there's still work to do,
She's pulling at me saying
"Dad I need you!
There's a ball at the castle
and I've been invited
and I need to practice my dancin'"
"Oh please, daddy, please!"
So I will dance with Cinderella. While she is here in my arms '
Cause I know something the prince never knew.
Oh I will dance with Cinderella
I don't wanna miss even one song,
Cuz all to soon the clock will strike midnight
And she'll be gone...

Thank you Heather for sharing your wish and accepting the call to serve the Lord as a role model for the benefit of the Lyme community!

Truhaboutlymedisease forum member "Sojourner" is Heather's mom.

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