A copy of a letter I received from Zach's parents.
First of all we want to say Thank you for everything you have done to help Zach and our family. Your charisma and concern for Zach is truly a blessing. We want to thank you and ALL the Star Wars Fans! We had no idea that a group of Star Wars fans could band together and make such an impact. We are very grateful for all the kind words, personal Star Wars gift items and the $2600.00 you so generously raised for Zachary.
We want to express our thanks for helping raise awareness for Zach`s Disease (CASR Gene Mutation – Genetic HypoPARAthyroidism). Thank you for contacting the news papers, TV and radio stations. Media is definitely the key to raise awareness. We are very grateful for all you`ve done in this regard. We want you to know we recognize the time and dedication it took for you to do all of this. You have a beautiful wife and two adorable children, a job and a host of other commitments. We want to thank you for taking the time to be concerned for Zach and we acknowledge all the passion you`ve given to this cause.
Two and a half years ago we were in a deep valley. Emotionally, physically and financially we were drained. As we look back we can see how God has used so many people to support us. We have a deep appreciation for the generosity that we have received. We have learnt so much and God continues to guide us and provide for us in ways we could never imagine.
In December of this past year, when we were told at NIH that Zach would no longer have funding through the compassionate care program, we were scared. When we returned home we immediately began lobbing Zach`s doctors here in Canada. They wrote letters to Alberta health services, Perry`s insurance company and Eli Lilly. Eli Lilly is the pharmaceutical company in Canada who is currently making PTH 1-34 (Forteo). This is the same drug that Zach was receiving through NIH. In Canada, this drug is only used for the treatment of osteoporosis.
Zachary`s Canadian and American Doctors wrote letters to persuade Eli Lilly, Alberta Health services and Perry`s insurance company to cover the cost of this medication for Zach because it is so costly. It seemed like a long shot. Eli Lilly said that they would provide the medication but would NOT help with the cost as it is being used as an off label drug. Then something amazing happened! Perry`s insurance Company through work agreed to pay for the medication! We could hardly believe it!
On Sunday April 14th, 2013, Zach received his first injection of PTH1-34 (Forteo) that was supplied here in Canada. He is the first child in Canada being treated with this medication from Eli Lilly (Instead of through the National Institutes of Health in the USA). He is making history, it is pretty amazing!
This past month we have been doing a lot of praying, thinking and talking. We are thankful for all the concern for Zach that you have given and for this exciting program you`ve created, Trench Run Rebels. In light of the fact that Zach`s medication is being covered by the insurance company it would not be morally right for us to continue to accept funds raised for this cause. We feel very strongly about this and would like to suggest that you begin supporting another sick child through Trench Run Rebels.
We are humbled and grateful for all you`ve done to help Zach. We are excited for the next child who gets the opportunity to be blessed by your generosity. We are thankful to all of those who have given of their time and assets to help our Zachy. May God Bless you.
Perry and Tanis Klassen"