MEET THE GOERTZENS

Source:  MEET THE GOERTZENS    Tag:  acute cmv
You may know the Goertzens  closely or may just be getting to know them, either way here's an introduction.



"As a family, we firmly believe that in the face of life's greatest trials, we have a choice to make. We can either focus on what Lyme Disease has taken away or we can choose to look beyond all that has been lost and find what is to be gained."


GRAHAM



Graham is in his mid-forties and does not have Lyme disease. But wait there's more! He's also a youth worker for a non-profit Christian youth organization in Vancouver.  He's keen on bikes, and prefers descending to ascending trails with his riding pals and his children before they got sick.

Even without a PhD, he can attest to the problem of Lyme disease here in southwestern British Columbia. Seeing first-hand how this crazy disease has pretty much ruined his wife's life since 2006 - and now threatening his two sons, he's determined to do what it takes to see them back to health and doing their chores.

As brutal as this whole Lyme thing is on so many levels, Graham is choosing to trust in God.

"When sickness and suffering unleashes its fury, some might think of it as God playing some sort of cruel joke... I choose to see a merciful God whose plans are so amazing - so complex and perfect. We are blessed - even through this!"


SHANNON 

Shannon's fight with Lyme is chronicled in her blog, ticksandtrust.blogspot.com. She has been undergoing aggressive treatment for the past 3 years. 

Her journey to diagnosis took 9 months. She was diagnosed in Canada and given some treatment. Even though she showed signs of improvement, doctors in Canada refused to extend her treatment past the recommended IDSA treatment guidelines that are followed in Canada. (It is noteworthy to mention that in the past year those guidelines have been proven to be flawed and riddled with conflicts of interest. despite this, Canada still practices the diagnosis and treatment based on these guidelines) 

The Goertzens tried to find a Canadian doctor who would extend her IV treatment past the 3 month mark. They tried, in vain, for 2 months. Shannon  did not receive any treatment during those 2 months and as a result her symptoms all returned with a vengeance. She began to lose her vision and become increasingly debilitated. Finally, a doctor told them,

"Your level of disability is severe but there is no doctor in Canada who will risk losing their license in order to treat you. I recommend that you go to the USA for treatment."



The Goertzens left that appointment deeply discouraged and despondent. They knew that Shannon was in desperate need of treatment. That night they received a phone call and (through a miracle) were offered seats on a private flight that had been hired to take another critically ill patient to see a Lyme specialist in California. The flight garnered much media attention and was deemed "The Lyme Life Flight". And indeed it was, Shannon and the other 2 patients that were on that flight have all made great strides on their road to recovery.

Shannon continues to be treated by DR H, who is a Lyme Disease specialist (LLMD) in California. Her treatment requires that she fly to California to see DR H every 3 months. In addition, she has monthly phone appointments with him. Recently, she has had to begin seeing an additional LLMD. This doctor, DR D, is only a 3 hour drive from where the Goertzens live. DR D is partnering with DR H in providing care and treatment for Shannon. Their partnership is helping to expedite Shannon's road to recovery as DR D can provide hands on care and assessments in between Shannon's visit to California to see DR H. 

Currently, she has a Canadian doctor who is partnering with her LLMDs to provide care. This helps to cover some of her medical expenses. But even with this support, last year her battle cost the family $20,000 in out of pocket medical expenses. 



TAYLOR

Taylor, 17, has struggled with his health for most of this past year. He has profound fatigue, headaches, nausea, and muscle fatigue. In fall of 2009, he got the chicken pox (yes, chicken pox at 17!) and contracted a mono-like viral infection called CMV.

As the months progressed he did not show signs of recovery and was still struggling with profound fatigue, headaches and concentration issues. In February 2010, he was diagnosed with acute CMV, EBV and Lyme disease. He is currently under the care of a doctor in the US and is undergoing the challenges of treatment. Taylor's treatment is not covered and he has no Canadian doctor who is willing to partner with his LLMD in the USA.

Due to his health challenges, he has missed much of his final year of high school. In March 2010, with just 3 months left of his grade 12 year, he was forced to withdraw from school. He is now working towards graduation through online schooling. 

Taylor is a Reservist with the Canadian Military. Private Goertzen's dream is to serve his country as an infantry soldier in the Armed Forces. He is passionate about protecting his country and those he loves. Before becoming ill, his plan was to enlist in the Armed Forces immediately upon graduation. He is still hoping to leave for boot camp this summer. Whether or not this will have to be postponed is not known. It is incredibly difficult for him and his family to face the likelihood that he may need to put his dreams and life on hold while he battles this disease.

PARKER aka SPARKY


Parker became ill in September 2009. His deterioration was alarmingly rapid. Within 6 weeks, he went from being a healthy, athletic, energetic 9 year old boy to being critically ill and often confined to a wheelchair. He quickly developed severe joint pain, headaches, nausea, tremors and body heat dis-regulation. 

During the fall, his attendance at school was sporadic at best.
Since December he has not been able to attend school at all. This has been very difficult for him but his school and teachers have been wonderfully supportive and committed to keeping him connected with his classmates.
  

After several hospitalizations, a multitude of appointments with different specialists, and 2 trips to the US to see doctors that specialize in Lyme, Parker was finally diagnosed in Feb 2010 with Lyme, Babesia and Mycoplasma. He began an aggressive treatment protocol in February.  





Currently, there is no Canadian doctor who is willing to take on the challenge of treating Parker's life-threatening condition. This means that all of his treatment is under the care of 2 American LLMDs. None of his treatment is covered in Canada.

Since beginning treatment, he has shown signs of improvement. On several occasions, he has even been well enough to be free of his wheelchair and play and be a kid again. Yet his recovery and fight is far from over. His doctors estimate that it will take 9-18 months of treatment for him to beat this disease that is stealing his childhood.



AVERY

 
 Avery, who will be 7 in May, is healthy and hilarious. She worries about her brothers and mom a lot. This has impacted her ability to concentrate in school. In spite of this, she has maintained her joyful spirit. She always has a ready smile...which is often followed by a witty retort of some sort. On several occasions, she has been overheard telling people that "my dad is a goofball...but that's ok because God made him that way!"
She is the family's self described cheer leader and fashionista extraordinaire. One day she would like to take over as fashion consultant on TLC's What Not To Wear. She's still debating who would be her first client - her mom or Don Cherry.. In her opinion, they both need help.






A NOTE FROM NAOMI:




Even in the face of all the physical challenges and financial struggles that fighting Lyme presents, the Goertzens are able to maintain their unconventional humor and continue to steadfastly Trust in God. 

It has now come to a place in their journey where they are in need of help to pay for the life-saving treatment that Shannon, Taylor and Parker are on. Their journey presents us, their friends and family, with a unique opportunity to partner with them as they battle this insidious disease and fight to regain their lives.


Please join me as a Partner in Lyme.

Put your love for this family in action!