"'For I know the plans I have for you,' declares the LORD, 'plans for wholeness and not for evil, to give you a future and a hope'" Jeramiah 29.11
Be Joyful always; pray continually; giving thanks in all circumstances, for this is the will for you in Christ Jesus.
I Thessalonians 5;16-18
CHECK THIS OUT!!! Press Play!!! Kylie being sung Happy Birthday to by all of her brothers and sisters on her 7th birthday (2006)!!! HOW COOL and FUN!!!
Welcome to Kylie's Web Page.
It has been provided to keep everyone updated about Squirt as she struggles with Diamond-Blackfan Anemia DBA is a bone marrow failure disease that has affected about 1000 people world wide.
Kylie was severly affected by the syndrome and was born with multiple birth defects including an ASD (heart defect), a cleft palate, a missing thumb, and multiple internal problems (too numerous to list) all associated with a Mid-line defect-from abnormal internal organs to a deformed pituitary gland. Suspected strokes as an infant have affected her gross motor skills, some mild neurological defecits from chronic hospitalizations and other syndrome relates causes, she was treached for her first three years of her life and spent a few years bouncing between being on an vent and on O2, was institutionalized until she was almost 3. She has been in over a dozen hospitals, had dozens of surgeries. There is so much more to write, but all that really matters is that thru all this all Kylie does is smile and share her love and joy with everyone she meets.
Kylie depended on transfusions every three weeks to keep her alive. After attempting to transplant her in Dec 03 we learned Kylie had serious liver damage from the Epstein-Barr Virus. About 93% of the population has this virus but fights it off easily.
For the longest time Kylie could not fight it off, and it has had a significant effect on her liver. Because of the liver issues and the EBV, We were told Kylie was ineligible for transplant. Finally, by the Grace of God and the advancements of her amazing doctors in Long Island, a special transplant regimine was created to specifically deal with Kylie's needs. On May 5, 2005 Kylie recieved her sister, Jordyn's, cord stem cells. Initially, Kylie lost the engraftment and we brought Kylie home believing we had to go back in three weeks for another transplant. But her doctor decided to try using Procrit to recover Jordyn's cells. This had never before been done. But, because Kylie's job here on earth is not yet done, IT WORKED! As of September Kylie was 90% engrafted with her sisters stem cells. She is well on her way to a C***. (cant say the word yet, bad karma!) Kylie's spirit has been larger than life and there has never been a child that loves life more than she.
The following links lead to other children with DBA. Some have even joined Kylie in defeating their DBA thru transplant.
KATE B. Katie's page was my very first experience with CaringBridge and I owe all my new CB family and friends to them 100%. Kate was also my inspiration when transplant became inevitable and I modeled my actions after Lesley, Kate's mom, who taught me how empowering knowledge is and how determination and being informed can be a signifigant factor in the survival of your child.
AUSTIN TANNER WALL AKA Austin the Builder or as we like to call him...SUPER AUSTIN MEGA DUDE!!!
CALEB NICHOLAS Caleb had a successful transplant in Florida last year!
TORI LYN Yet another successful DBA transplant for 2005!! WOOHOO!!!
KATIE T. Katie is currently at Memorial Sloan Kettering cancer Center undergoing her stem cell transplant. Thursday, May 25th, 2006 she will recieve her little brother's stem cells and start a whole new life. PLEASE, PLEASE, PLEASE, pray for her that she finds the same fortune and future that Kylie did...
CLICK HERE If you want to honor Kylies new life and re-birth, consider donating to the Tumbleweeds Family Relief Fund.. FAMILY RELIEF FUND During time like this the financial stresses imposed on us parents may be the ONLY thing people can actually help with. So if you ever said to a parent with a sick kid, "What can I do to help?" Well, this is certinly it! The TWF uses this fund to assist families with the financial hardship a sick child brings on. From travel expences to lost wages due to missed work. This kind of assistance can actually relieve more stess then you may ever realise. Believe me... I know...
Often children must travel hundreds of miles from home to receive specialized treatment. KINfolk is there for these children. KINfolk provides a traveling computer for the child. This computer is assigned to go with the child wherever he or she may go during the course of his or her illness. This program provides uninterrupted contact for the child and his or her online support network. Parents traveling with the child may also use the computer to keep in touch with home and work, allowing them more time with the child while maintaining employment. Many KINfolk children use the computers to talk to their parents and siblings at home. Please contact LINDA WHITE if you are interested! Please visit their web page to learn more about this wonderful organization. KINfolk-Helping keep kids connected.
BAND TOGETHER My heartfelt thanks to the Band Together company. It is soooo amazing to recieve such support from strangers who are over 3,000 miles away! If you ever consider having these bracelets made for a sick child or organization I HIGHLY recommend them!
NATIONAL MARROW DONOR PROGRAM Please look into being a marrow donor! You could give someone a second chance at life! Our goal is to NEVER have anyone who needs to have to wait for their transfusion because of low supplies and that no one who ever needs a bone marrow transplant has to be told, "I'm sorry, there is no match for you..." Please, help us reach that goal!
MARTY LYONS FOUNDATION The MLF granted Kylies wish to go to Disney and swim with the dolphins this past March before transplant
MAKE A WISH FOUNDATION These folks brought kylie together with her one true love..ELMO! She proposed and he said YES! (can you imagine what their kids will look like?)
$1 MILLION TO DBA RESEARCH Press release on the million dollar grant given to Kylie's doctors in Long Island to study Diamond-Blackfan Anemia.
DIAMOND BLACKFAN ANEMIA This website was created by the wife of a DBA-er. It is all about DBA for the patient, family, friends and it's all in ENGLISH! Not Doctor speak. There is SO much info here.
KUM SUNG KARATE Master Coyne and his wife Trish are very involved in fundraising for Kylie and we will forever be greatful!
A Tax Exempt Account has been established for Kylie to help us with the expenses related to her transplant and medical care and for our "Grateful Giving" mission to send care packages to kids having Stem Cell Transplants across the nation. CURE KYLIE FUND Attention: Michele Francis Wachovia Bank 1700 Rt.37& Vaughn Ave. Toms River, NJ 08753 The account number is 2000012861798
Tax Exempt # 76-0781768 You can also go into any Wachovia Bank and tell them you want to make a donation to the "Cure Kylie Fund". The account number is not necessary, but it helps! Thank you for all your support.
During Kylie's transplant she was isolated in a 10x6 room for 8 weeks. She was unable to kiss our lips, touch our skin or even let her bare feet touch the floor. The hours spent staring out the window were un-measurable. Friends and strangers sent Kylie "care packages" to help pass the time and Kylie was thrilled to receive these treats, but her real joy came in sharing her goodies with the other child on the Stem Cell Unit. THAT was what really made her happy. Making OTHERS smile. We know the importance of having your spirit lifted so that your health can soar too, so these distractions were sometimes the best kind of medicine for her (and us!) After we recovered as a family from her transplant we knew it was time to give back what we were so grateful to have recieved. Hence, the conception of THE CURE KYLIE FOUNDATION - Grateful Giving~ Care Packages Of Hope What started as Kylie and her brothers and sisters making packages for kids in transplant at Schneiders (where Kylie had her SCT) has spread like wild fire. Our mission is to twofold- 1.) To lift the spirits of children and their families going through a stem cell transplant . 2.) To teach our children to give in gratitude for what they have received, to bless others the way that they have been blessed and to share their love and compassion with those needing comfort and support. Click here to contact
CURE KYLIE CLUB Send me your photos!!! I know they are out there...out of 2000 bands there has GOT to be some pics! CURE KYLIE CLUB IS CURRENTLY UNDER CONSTRUCTION- I am trying to make it a separate link to go to to view all the pics of our supporters. Still looking for more pictures to add to the bunch!!!
Angels...
ANGEL KALLIE MAE ANGEL HAYLEY ANGEL TREY ANGEL NELSON ANGEL GARRETT ANGEL JOE K. ANGEL JACOB ANGEL MELODY ANGEL STANTON ANGEL EMMA GRACE ANGEL REID ANGEL ROLY
Kylie has been blessed...In many, many, ways. She walks on water in my eyes. She IS a miracle. I strongly believe all the love and prayers from friends, family and strangers alike have saved her on many an occasion. I want to share that wealth of love and prayers with those who are suffering more than you can imagine.
Red is the color for Lymphoma Awareness. This beast took Kylie's Great-Grandma Tessie from us on December 27, 2003. Burgundy is the color for Multiple Meyeloma MM is a cancer of the plasma cells in the blood. Kylie's Grandpa in NY is battling this disease right now. There is no cure for MM, just ways to treat its symptoms.
The dove of peace flies around the world, Save her, and put her on your site, too.
Dear God,
Please bless the children of earth, mine and all others, the precious angels in our midst. Send all darkness away from them.
Thank you, God. Amen. -Marianne Williamson, "Illuminated Prayers"
LIGHTS ! CAMERA ! PASS THE POPCORN ! EVEN ELMO IS EXCITED !
KYLIE'S FAMILY PHOTO SLIDESHOW ! MEET KYLIE'S FAMILY ! NEW PHOTOS ADDED 11-19-04 ! CLICK HERE
TO BEST VIEW SLIDESHOWS MAX YOUR SCREEN AND IF YOU HAVE A POP UP BLOCKER YOU NEED TO TURN IT OFF PLEASE ALLOW A MINUTE OR SO FOR THE SLIDESHOWS TO START
ANGEL TOTO
Remember Kylie's Elmo page? Special thanks to her designers!
FAMILY PHOTOS!!!
Our 72 hour trip to hell, oops I mean North Carolina. (August 2006)
Oldies, but goodies! (like YO' MAMMA!!!!)
All the Camp Sunshine pictures that were here, but in flipbook form. (July 2006)
Heroes don't always have to have a shiny red cape or a badge. Some of the greatest heroes pass by us unknowingly but live on in the people who are alive simply because they were brave enough to give their blood. To all THOSE heroes, WE SALUTE YOU!!!
Journal
Tuesday, February 1, 2011 10:20 AM CST
Well, Kylies journey has come full circle. She was born. She struggled, She was diagnosed, She struggled more and finally, she was transplanted. And today Kylie is almost 12 years old and full of life... and promise...and a future. And thanks to the Oprah Winfrey Network, the entire nation knows! My tv star, my miracle, my hero. God blessed us infinately the day He gave us you, Kylie Jae. Here is a portion of Kylies Mystery Diagnosis episode released to YouTube.
Patient Room: bottom bunk, first room on your left, at the top of the perpetually sticky stairs!
Hospital??? What hospital???? WE'RE CURED!!!! House on the Hill (similar to Norman Bates little love shack) 833 Somerset Dr Toms (NOT Bob's) River, NJ 08753 if I told ya I'd have to kill ya!
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