Saturday, February 2, 2008

Emma & Taylor Donations & Future Non-Profit Organization for Families with Conjoined Twins


These past several years have been full of ups and downs that have created experiences for our family that we would have never expected. We never expected to have 6 miscarriages. We never expected having conjoined twins. We never expected our daughters to come home. And we never expected to go down a road that had hope for a separation. What we did expect though, was that whatever lay ahead for our family, that we would do our best to manage and keep this a positive experience for us and our children.
Why a Donation Fund for Emma & Taylor? Over the course of the past 17 months since our daughters birth, we have explored separation options and sent their file to several top ranked doctors around the world. The response was the same: What a miraculous situation that our daughters are alive-they shouldn't be, and to their regret, the only option to separate would be to sacrifice one for the other and with a heart transplant. At first, these were disappointing conversations to have, but certainly we will take our daughters as they are than risk one life for the other. And so we were content to enjoy them as they are, for what little time we may have. But over the past few months, we have learned of an artificial heart for toddlers that has been developed and successful in patients. We are to begin preliminary testing for separation in the coming weeks, and if things go well and we feel comfortable, we will proceed towards a separation for our daughters. Insurance will cover all the medical testing and surgeries, which will occur both in and out of state. From that point, the best location for preparation and surgery will be determined, and we will need to relocate for several months. The preliminary plan is to give each baby an artificial heart, allow time to recover and regain strength, then have their artificial hearts replaced with donor transplant hearts. Again, insurance will cover these medical expenses, but we are not in a position to manage travel, housing and time away from work over this broad span of time. That is the purpose for the donations.
Future Non-Profit Organization for Families with Conjoined Twins: My husband and I hesitated about seeking public funds for 2 main reaons: One, we were concerned about raising funds and not going forward with a separation if everything didn't feel right; and two, we were also concerned about the possibility of having excess funds. After much thought and conversation, we concluded we felt comfortable raising funds only if we committed ourselves to a non-profit organization to help other families with conjoined twins. Conjoined Twins occur in about 1 in every 100,000 births, approximately 40 per year in the United States. Of those 40, 25% make it to full term and birth. Of that 25%, or 10, 4 of these sets of twins will survive the first day of their lives. Now of those 4, some may survive a few days or weeks, some may even be able to come home from the hospital if they are able to ween off oxygen and feeding tubes. And maybe there will be one set that has long term survival and separation possibilities. We tend to only hear about that 1 or 2 sets of conjoined twins that were born and have been separated. And as wonderful as that is for those children and their families, there are far more families that have had to bury their children. We know how it felt for us in handling the very real possibility of losing 2 children at birth, which was a very heavy burden, we can only imagine the reality that this is for so many families. And although we cannot change a mother's challenge of empty arms that ache to hold her children, our goal is to create a way to lighten the financial burden of funeral and burial costs for these parents thru an organization for families with conjoined twins.
Donations for Emma & Taylor Bailey & Future Non-Profit Organization for Families with Conjoined Twins:
We've been having a few problems keeping these accounts secure and have for now, pulled and closed the accounts. We hope to have an alternative soon--

15 comments:

Alisa Larson said...

What special and darling girls. My grandmother just called to tell me about them and to see if we all could donate something. We will be praying for you.God bless.

sari said...

Hi Mandy,

I read your story in the Arizona Republic and it really touched my heart. I have three sons - aged 9, 6 and 4 months old, so I really identify with you. I of course have no idea what you're actually going through but I know the love you have for your children. I'm praying that whatever happens with your beautiful girls that they are happy and healthy - whether you end up going through with the separation or not. We actually don't live too far from you and I know we're strangers but your story touched me and I'd love to be able to help you in some way. I do have the bank account numbers listed in the article but if you need help in another way, I'd love to do what I can. I know people need help in more ways than just money.

Blessings to you all!!

Mom said...

Hi Mandy - Emma and Taylor are beautiful and I continue to pray for them and your family.

Your family is beautiful and I love the photo you posted with all the children.


As I have said before if you need anything I am happy to help in any way that I can.

Lisa N

Breezy Studios said...

Hi Mandy,
I love your family and am so thankful to know you! You are an absolute inspirations.

Sally B. said...

Dear Bailey Family-

I read your story today in the Arizona Republic/Gilbert Republic section. I too live in Queen Creek. You have an amazing story and an amazing family. May God Bless you all. We are having a community yard sale on March 29th, in Taylor Ranch. With your permission, I would like to ask my neighbors to make donations from their sales to Emma and Taylor and the future Non-Profit Organization you are starting. Please let me know at your convenience. God Bless you all.
-Sally B.

Bailey Bunch said...

We love you all so much!:) Tell those kids that uncle Ty-Ty, Aunt Rachel and cousin Isabella think about all of them often and you are always in our prayers. Miss you!

Hawaiian Simpson Family: said...

Hey Mandy,

It's been a long time since I've seen you or Tor. I think I was 12 or 13 and then I did see Tor at Grandma Maxfield's funeral a few years back. I am so glad you have a blog where I can check in and see how your beautiful family is doing. You are such a strong woman and I look up to you so much. I hope you are all well and happy.

Love, Kristy (Alo) Simpson

Saralyn said...

I just saw you on the Today Show! I'm so happy you were able to be on the show! How exciting! We think about you a lot and we are thankful to know the Baileys!

Sondra said...

Hi,

Sondra said...

Hi,

Your story touched me, as well as numerous people.
I'm the editor of a local southeast Valley publication, based in Gilbert, and would love to do a story about your family and further publicize the foundation you've created to garner more awareness of your situation. Could you please contact me at royalnotary@yahoo.com?

Amy and Dave said...

Hello Mandy - My name is Amy Mathias and I live in Simpsonville, South Carolina just outside of Greenville, SC. I came across your families story and will be praying for your little girls health and happiness. God works in mysterious ways and I think everyone has a perpose in life. If you need anything and are ever in the SouthEast please look me up. God Bless!
Amy

The Bottjer Family said...

We just wanted to tell you that we love you and are thinking of you. We hope and pray for nothing but the best for your family each day.

Katie J. Layton said...

I loved watching your family on the Today Show. I don't know how you do it. You are an amazing mother and person. I don't understand sometimes why Heavenly Father gives people certain trials. Then I watched you on the Today Show and read your daughters story and it sincerely uplifted me and makes me want to be better. You are wonderful examples to all around you. I am so happy you started a fund for your girls and for other families going through the same thing. It helps everyone to get involved and makes us more aware. I am also happy that you started this blog so that I am able to see what steps are being taken and how your daughters are doing. I think about you all the time. It is pretty pathetic that our ward was split and now I seriously never see you. I've waved to you many times while you and Gini are walking, but I don't know if you have ever seen me. We want to donate also to this amazing fund and more importantly, we will be praying for your precious girls and your amazing family.

Momma x5 said...

Wow--what beautiful children! I wonder if you've gotten in touch with the the Herrin family? Similar situation, as you can see on their site. I remember watching them with such tuggings at my heartstrings! Wishing the best for all of you!

carlys life said...

hi i m from australia and your girls are sooo cute i linked your nbc today show back to my blog if thats ok please tell me if it isnt ill be following you guys blog

hugs from carly tasmania australia