Friday, March 03, 2006

Jenelle's Avocado & Genetic Test Results!

Last night, we got home to find a message on our answering machine from UCLA Genetics. Yes, the results we've all been waiting for are finally here. Not sure if this is good news or bad news, but basically we're in the same place as when we started. Jenelle's genetic test for atypical Rett Syndrome was negative (as in she does not have atypical Rett Syndrome.) There is a "follow up" genetic test for the Rett gene that they want to run, and we should have those results in two weeks. This second test however will officially rule out all possibility of Rett, so we are still in a waiting game of sorts.

What does this mean? Well, none of this genetic testing will ever change who Jenelle is, nor will it change her medical problems. It is just a way for us to "find out what happened" to make Jenelle the medically complex child she is today. It is also a way of answering whether or not we might encounter similar problems should we decide to have more children or if Jack has a genetic flaw that he could pass onto his children. In a weird way I'm disappointed, because if Jenelle had Rett Syndrome, it would have been caused by a gene mutation (a "fluke" for lack of better words) and not a genetic flaw in our DNA. So for now, that question about our genetics remains unanswered. Isn't science fascinating?

So, now that the update part of this is over, I want to share with you the special story about "Jenelle's Avocado." Remember the Epilepsy Freedom Walk from 2 years ago? Well its back! Please mark your calendar for June 3 for this year's Epilepsy Freedom Walk in Irvine, California to support the Epilepsy Alliance of Orange County. Both Brett and I are on the planning committee for this year's walk, so expect to hear lots about this in the coming weeks. Brett is in charge of getting corporate sponsors (so if you or your business are interested, please let him know) and I am in charge of marketing. Should be a lot of work, but well worth the effort for this wonderful organization that has been so supportive to our family.

And now, more about Jenelle's Avocado:

Remember me telling you about the little boy in Virginia who held a lemonade stand to raise money for "Team Jenelle" during the last Freedom Walk? Well he has already started to raise money for the next Walk! Here is the message I got from his Mom last night:

Jenelle's avacado has already raised $65 for the Freedom Walk. I let him know the date, and he said he wants to raise $100 at least.

He is planning a lemonade day and has been putting money aside from his allowance and extra money he has earned (walking dogs, watering plants, etc.)

I think that he will always be Jenelle's avacado. Your little beauty has brought out an extremely protective and determined side of him. If 10 year old positive energy and sheer determination could help Jenelle, she would have no medical problems.

Thank you for sharing her with us. You cannot know how she has touched our hearts.

I know many of you feel the same about Jenelle, and it makes me proud to be her Mommy to know that she has made such an impression in so many lives. I know that she has certainly changed my life. Oh, and you're probably wondering how "avocados" fit into this story. The little boy frequently prays for Jenelle and has told his Mommy on numerous occasions that he wants to grow up and be her "avacado" - meaning he wants to be her advocate!

I think we might change our team name this year to "Jenelle's Avocados" instead of "Team Jenelle"… has a nice ring to it don't you think? Thanks for the continued prayers - I'll keep you posted!


Me said...

I'm so glad you explained the Avocado part! I also love the name... I'd support a name change just because it's so cute and memorable. Kind of like the "Sixty Five Roses" for Cystic Fibrosis. It sticks with ya.

TBG said...

What a great cause. I will be sending in some money for sure. What a great little boy. I love Jenellle's Avocados...too cute!