UPDATE - 09-10-04 12am : Lyrics to Caela's song have been added in the Life Celebration section. Information for Caela Farmer FunD Fest 2004 has been updated including the Car Show and the Grand Prize raffle. Last but not least we have updated the site with the new logo. Thank you Everette Gray.
UPDATE - 08-06-04 2am : We have finally added our forum. There are 3 topic areas "In Loving Memory", "Fund Fest", and "Rett Syndrome". Feel free to post and share. FYI: The forum is interactive so you must sign-up to login. This can be done on the forum home page.
UPDATE - 08-04-04 8am : The site has been updated with the content of Caela's Life Celebration. For those of you who could not attend we hope this will help you share in the spirit of that day.
UPDATE - 08-03-04 9am : Ronnie Polaneczky has written a column in the Daily news today titled "High Praise is due these special parents." Thank you Ronnie.
UPDATE - 7-29-04 8am:: The four of us spent last week getting some much-needed tranquility and quiet time at the Jersey shore, thanks to the generosity of a good friend. It was a good way to transition from the intensity of the week of Caela's passing to the inevitably difficult changes awaiting us in our everyday routine back here at home. We want to thank you all for the many cards, emails, and phone calls we have been receiving over the last two weeks - your thoughts and prayers strengthen and encourage us daily. It has blessed us so much to learn how Caela impacted many of your lives and how you plan on honoring her memory. We know that the ripples that Caela caused during her life will be carried on in your daily kindnesses and in the intention with which many of you are living out a life of purpose and peace.
We are also very grateful for the donations so many of you have been sending to the Caela Farmer Bright Future Fund. It is through your contributions that we will be able to build a lasting and tangible legacy in Caela's honor. We know there is much work to be done to not only bring an end to Rett Syndrome, but to ensure that families with kids who struggle with illness and disabilities have a good quality of life, full of opportunity and hope. We hope that many of you will join us on September 26th for the Caela Farmer FunD Fest 2004 as we work together towards these goals.
We have spent some time this week adding more information to the site...there are now updates in the "Medical Log" detailing the medical issues Caela faced in 2004. "Caela's Story" has also been updated.
UPDATE - 07-18-04 5pm: THANK YOU! Yesterday was a beautiful day and there could not have been a more perfecting ending to her precious life. I will be updating the site with the readings from the Life Celebration as well as the songs, and Caela's last Medical Log entries. If you went to the Life Celebration on Saturday and didn't sign-in, please send an email to: email@example.com. We would like to keep a record of all who attended. We love you all and thank you from the bottom of our hearts.
UPDATE - 07-13-04 2am: I know, I know... we should get some rest. Even though our Caela is gone, we still need to continue her fight against Rett, which is diagnosed in 1:15,000 girls. Despite our grief, we are determined as ever to continue the mission of the Bright Future Fund, to help improve the lives of families like ours. We have many ideas, but we need your help. We hope you join us in creating this new beginning - the beginning of a legacy worthy of our baby girl. [FunD Fest 2004]
UPDATE - 07-12-04 11pm: Caela will be on her way to Harvard to continue her fight against the "Rett Monster." We have donated her brain and other tissues for continuing Rett research. Given the rarity of her disease, we are hoping this will lead to a major advancement in the search for a cure.
UPDATE - 07-12-04 7pm:
We appreciate all your prayers and support. In lieu of flowers we would like donations made to the Caela Farmer Bright Future Fund. We will be using your gifts to carry on her legacy, to still fight Rett Syndrome, to help children and their families with severe disabilities, and spread the overwhelming love that our little girl brought into this world.
** We welcome you to fellowship with us at the church, following the service.
UPDATE - 07-12-04 10am: On July 8th 2004, Caela suffered a heart attack while in her negative pressure vent, "Iron Lung" at home. She was rushed to CHOP (Children's Hospital of Philadelphia) and was clinically dead for approximately 25 minutes. Being the trooper that she is, Caela regained her heart rhythm and started to breathe, but her pupils were fixed and dilated (totally unresponsive). On July 9th she was stabilized, thank you Dr. Nadkarni, and was transported to her "second" home A.I. DuPont Children's Hospital at 3pm. Unfortunately, she progressively got weaker and her pupils were still fixed and dilated indicating severe neurological trauma. Her heart was still beating strong, but she was not breathing above her ventilator settings. On July 10th she remained in this state. On July 11th her condition was still unchanged. On July 12th at 12:49am Caela passed. On July 12th 12:49:01 we are still her parents.
UPDATE - 03-26-04: CAELA HAS A DIAGNOSIS!!! Caela was diagnosed with Rett Syndrome on Friday, March 26, 2004, mutation R255X, with her X inactivation percentage putting her in the atypical and severe category. Rett Syndrome is a relatively rare X-linked neurodevelopmental disorder (1 in 15,000), that occurs primarily in females and can affect many aspects of growth and physiological functioning. Although this is a difficult diagnosis, it is a long-awaited answer to prayer for us to finally be able to name the illness that has changed our life so much. It has also given us membership to an international community of families who each love a girl with Rett Syndrome. Finally, it has allowed us to target the medical research that can directly affect Caela's treatment and care, and we try to absorb and apply the medical info and science as quickly as it becomes available to us. It is our hope to share more about Rett Syndrome with all of you at the 2004 Caela Farmer Fund Fest. We hope you can join us...
- Bienvenidos!!! If
you are visiting us, chances are you have heard a little
something about our little girl, Caela Isabel Farmer.
We have designed this website to spread the word about
Caela and the many challenges she has faced in her short life,
in hopes of inspiring others by her story and sharing a
testimony of how faithful God has been to us.
We would also like this site to be a place where the
many people who care about us and have been praying for Caela
can get to know her better, get updates on her condition, and
follow her progress during hospitalizations.
Finally, this website will contain updates and details
Farmer FunD Fest 2003,
the exciting benefit event our very supportive family and
friends have planned to help us meet the expenses we continue
to incur in providing a high-quality life for Caela.
This website will provide a way for you to support our
fundraising efforts and become a part of the generous
community that is helping Caela attain the same goals that we
all have for the children in our lives.
Our hope is to someday
extend this same generosity far beyond our family to
other families of kids like Caela, so that in the end, Caela's
hardships can bring about as much goodwill as
possible. Thank you for taking the time to visit our site, we ask
for your continued thoughts and prayers, and we hope that you
take a little of Caela’s courageous spirit with you for your
own journey. Please
be sure to visit us again soon!
Peace and blessings,
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