Wednesday, April 02, 2008

Q & A

Just wanting to help clarify a few things....

1. Why China?

At this point in time there is no treatment available in Canada and no upcoming clinical trials for Batten Disease. In the US, they are between trials. In China, what is offered elsewhere as experimental, is considered treatment and therefore available to anyone who can pay for it.

2. Are you sure it's not a scam?

Believe me, we have referenced and cross-referenced the centre in question as much as we possibly can. I have spoken with people who have been there and contacted organizations who I believe are reputable to get their opinion. I'm not one who likes to part ways with my money and the tens of thousands of dollars this treatment costs is not something that I take lightly- especially because it's been given in good faith by so many awesome people.

3. This is a genetic condition....can your other kids have it.....are you having them tested?

This is a question that seems to come up rather frequently. The simple answer is yes...possibly...not at this point. Because my older 2 kids have a different father and are nearing the pre-teen years, there is a slim chance that they could be carriers of the recessive gene that causes Batten Disease. The odds change considerably for my youngest daughter. She has a 25% chance of also having this condition. At this point she has not exhibited any signs and we are hopeful that she has been spared. While having her tested could bring about some relief, we do not feel that it's worth the pain we would experience if she tested positive and we were then forced to sit and wait for the disease to begin to manifest itself. It is easier for us to live with the vague, looming threat that it could happen but might not. She will however need to be tested later on to determine if she is a carrier. The chance of this occurring are considerably higher at 50%.

3. I heard Trent's grandma died of Batten Disease....

This rumour has begun to circulate in a smaller local community and frustrates me to no end on so many levels. I don't particularly enjoy the fact that my daughter has become small town gossip fodder. I also truly hate it when people begin to spread things as fact without verifying their information. Several people worked very hard on a website to help keep people informed but it seems that very few actually click on the "about batten disease" link. Trent's grandma died of ALS and nothing else. Because they are both neurodegenerative conditions they share some similarities. Symptoms of late infantile batten disease occur between the ages of 2 and 4. Children rarely live past 8-12. Trent's grandma was in her 70's......enough said.

4. "I don't see why you need to fund raise, it's not like it's a rare condition or anything. There are 2 kids in Saskatchewan who have it...."

Don't you love small town people with big mouths? I found this one particularly interesting because the family mentioned is also fundraising in their community. While there are 2 children in the neighboring province with Batten Disease and we were saddened to hear the news, the fact that there are a handful of kids in Canada with the condition still classifies it as rare. Because the government offers no real assistance, parents must come up with the funding on their own.

5. Don't you hate airplanes?

Yes, yes I do and the thought of going on a 12 hour flight over a vast body of water disturbs me greatly. But then, I have also lost sleep over things like "Jack Bauer vents"* and Hanta virus, because I'm neurotic like that. Sometimes you just have to suck it up and do what you have to do.

6. Tatyanna's lucky to have parents who are willing to go to those lengths for her...

While these sort of comments leave me feeling sort warm and fuzzy and kind of odd, I really don't understand them. How could we not do what we are doing? How could we not try? How could we look her in the eye knowing we were doing nothing other than simply waiting for the end? If you were to spend a day with her, you'd understand. She's a pretty awesome little kid. I only wish I could do more.

7. Are your older kids o.k. with the fundraising...the trip to china etc.

They know that we are doing for Tatyanna exactly what they would want us to do for them if they were the ones in her position. We are trying to keep them as involved as possible and while having your mom and step-dad gone for 8 weeks won't be easy, they are old enough to understand. Current technology makes it relatively easy to stay in regular contact. Truthfully, sometimes I think they are just excited to see what we will bring them back from China!

*I believe it was in season 3 where a viral agent was released into a hotel through the internal air circulation system. To this day, I still look for the vent type immediately upon entering a hotel room. Fortunately, I have noticed in the many hotels that I have stayed in over the last few years, most have air systems that vent to the outside. Internal vent systems will always be known as "jack bauer vents"

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