Tuesday, April 27, 2010
My T-18 Family friend, Stefanie Hilarczyk, had put together a fantastic collection of recipes in order to raise money for the Trisomy 18 Foundation and to help raise awareness of Trisomy 18. The cookbook is in honor of her nephew, Timmy, who has a mosaic form of triosmy 18. It is called Timmy's Tasty Treats to Topple Trisomy 18, and I know they're tasty, because I submitted several yummy recipes myself!! :-)
Rebekah (along with several of her T-18 friends) is featured in the informational video introducing the cookbook, so check it out! She was about 6 months in that picture.
Pre-sales are going on right now for the cookbook. So please help support this cause and get some tasty treats along the way!
Cooks cost $25 + $5 S&H ($30 total). They are $10 S&H ($35 total) for overseas orders. Just Paypal Stefanie at firstname.lastname@example.org. Be sure to send her your address with the order! The cookbooks will be in her hands by June 2nd, and she will ship them out as soon as they arrive.
Thank you for supporting the trisomy 18 cause!
Wednesday, April 21, 2010
- Rebekah's First Birthday;
- Media coverage that will hopefully open the door so that we can educate more people (especially the medical community) about trisomy 18/13;
- A medical specialist happy to take on Rebekah's 'complicated' care in a proactive manner!
Monday, April 5, 2010
On April 17th, we will be throwing a party at our church for Rebekah's first birthday (which is actually 4/21). Because I am budget-conscious and, well, a really bad procrastinator and lazy when it comes to mailing things, I created Rebekah's birthday invitation on facebook about a month ago and never sent the details to any of our dear friends not on facebook! (I do have to admit that I created and sent a picture card invitation to all of her medical community contacts, but that is because I REALLY want them to come and see that our daughter is REBEKAH and not just a TRISOMY 18 statistical number).
But life happens... Rebekah had RSV, then crazy school schedules for the kids, traveling, an ER trip... So I have spent the last 2 hours trying to create a late evite invitation for her party, only to be stumped with limited text description and picture size! UGH!! I am posting the complete invitation here to the blog so I can link to it from the evite. If you see it here, and not in facebook or an evite email, please make sure you go to the evite to RSVP so I have an accurate headcount. And for my family and friends receiving this late - well, that's just me, what can I say! We know you've heard that this event is coming. I love you all and hope you can join us for this celebration, so don't get hung up on a late electronic invitation!
EVITE LINK TO RSVP (but please read all the details below because it doesn't fit on the evite!)
YOU ARE INVITED TO THE BIGGEST BIRTHDAY PARTY OF THE YEAR!
(Well, at least in Simpsonville, SC!)
Rebekah Faith Budd,
born with full Trisomy 18 on 4/21/2009,
is redefining "Incompatible With Life"!
Saturday, April 17, 2010
1:45pm - 4:30pm
MPAC Building @ First Baptist Church Simpsonville
East Curtis St & College St
Rebekah Faith Budd was diagnosed prenatally with trisomy 18 and never expected to live. (See bottom of this post for more info on trisomy 18). We prayed, with many others, that our little girl would defy the odds and would thrive, but more importantly, that her life would have a greater purpose!
She has now made it to a tremendous milestone - her FIRST BIRTHDAY! This is a day too many families of trisomy 18 kids never get to celebrate. So we want to celebrate BIG and celebrate in honor of all the T-18 kids out there. And we want to hear all of the ways Rebekah has blessed the lives of those around us. So you are invited to celebrate with us, and help us document why these children should be given a chance!
And if you have not met this little bundle of joy yet, you will not want to miss this opportunity to see her and several of her special T-18 friends who will be celebrating with us!
Sign In - Please try to arrive between 1:40-2:00 to 'sign-in' for the party! We want to make sure we have an accurate account of who attended!
- On-Going Slideshow of Rebekah's 1st year.
- Welcome and opening words
- Rebekah's Story / Testimony
- Update on the World of Trisomy 18
- Introduction of Guests of Honor - several T-18 friends and those from the medical community involved in Rebekah's care who are attending
- A slide show tribute to our T-18 "angel" friends
- A few words from Pastor Randy
- Blessing for Rebekah and her T-18 friends
- Cake and light refreshments served
- Open Mic - an opportunity for anyone to share a few words about how Rebekah's journey has impacted your life. Share a favorite verse, quote or poem relevant to this occassion! For those that cannot attend, we will read off words of encouragement that we have received. This will be taped so that we can show others that these children are worth saving!
- Closing remarks and thank you's
- Balloon Release by all guests attending
GIFTS - YOU'RE PRESENCE IS OUR PRESENT!
Because of Rebekah's trach, g-tube and physical/developmental uniqueness, we will have a Wishing Well in lieu of gifts. This will help us to purchase items specific to her needs, including specialized and therapeutic equipment not covered by insurance. We also want to create information packets for the local medical community to educate them on the current world of trisomy 18.
But please know, your presence is our present! We expect no other gifts. Please just come and celebrate this amazing little girl with us!
Please RSVP by April 10th and comment on total guests attending so we can order enough cake!
If you cannot attend and would like to send a birthday card, please send those to:
Rebekah Faith Budd
128 Horsepen Way
Simpsonville, SC 29681
THANK YOU TO EVERYONE FOR SHARING IN THIS VERY SPECIAL EVENT WITH US! WE THANK YOU ALSO FOR YOUR CONTINUED PRAYERS AND SUPPORT!
Susan, Michael, Elijah, Jeremiah, Isaiah, Josiah & Rebekah
- FACEBOOK FAN PAGE - I just created a Fan Page for Rebekah. Please become her fan!
- FACEBOOK EVENT PAGE - http://www.facebook.com/#!/event.php?eid=327118879639
- BLOG WEBSITE - http://www.buddzoo.com/
- TRISOMY 18 FOUNDATION - http://www.trisomy18.org
- SOFT (Support Organization for Trisomy 18, 13 and Related Disorders) - http://trisomy.org/
TRISOMY 18 BACKGROUND
Trisomy 18, Edward's Syndrome, is a chromosomal defect in which there is an extra 18th chromosome in every cell of the body. The effects of an extra 18th chromosome are usually a lot more life-threatening with more critical birth defects than that of the more known Trisomy 21 (Down's Syndrome). Because of the prognosis, it is deemed "incompatible with life' and many medical professionals encourage women to terminate their pregnancies early or deny/fail to provide aggressive medical treatments.
Many different statistics are posted regarding life expectancy, but the fact is that most babies die before they are born (statistics say anywhere between 50-90%) and most of those born alive die by 2 weeks old (up to another 50%). Few make it to the milestone of their first birthday, and of those that make it that far, life expectancy remains unknown due to their medically fragile nature.
Sunday, April 4, 2010
In my own life, 4/21 marks another type of death and resurrection in my life. I was already a born-again believer but this experience has challenged me beyond my head knowledge of Christianity and faith and made me step out where I never would've asked to go. My daughter, Rebekah, was born with full trisomy 18 on 4/21/09 and was not expected to live. But she DID live. And I have been connected to countless others who are on this same journey, and some have had to already suffer the death of their child. In either situation, I have seen time after time the power of prayer and the strength and grace supplied to face this path. The experience has changed my outlook on life. My faith has increased tremendously along with my burden to share Christ with others. He has allowed me to find joy and peace in the midst of suffering, and unleashed a strength in me I never knew I had. Well, that's because it ISN'T my strength, it's from my Lord and Savior, and that is my point. It is so much MORE than a story! And this one point is only one of MANY things I could list as my personal eyewitness testimony to the power of the cross.
So He is Risen, indeed! How gracious and loving our God is and how amazing his grace!
And if this just sounds crazy and you don't have your own 'story' to tell, He is waiting for you to simply reach out and accept His simple and perfect gift of salvation. Then you, too, can realize the power of the cross and a resurrected Savior!