UPDATE 4.21.2010
Wow, it has been well over a year and a lot has changed. Faybree is full spead ahead and running, galloping and being a normal 2 year old. We still face obsticles, but with out those life wouldn’t be right. We embrace them and get through them. We have moved to Richmond, VA since the last post and certainly miss our family and friends. We are embracing the nature that VA has to offer which is great because Faybree loves the outdoors. Faybree currently is seeing a speech therapist as she only says a few words (maybe 5) as well as an educator to make sure that big brain of hers is always working and getting smart. The educator and speech therapist work hand and hand. We are thrilled to say she has been off of her feeding tube for almost a year now. She eats and drinks all by mouth. However, she started taking a liking to a bottle on Feb. 28, 2009 for the first time and has not put it down. Funny how I remember that exact date. I guess I was so thrilled she finally took the bottle after only taking it for 2 weeks of her life. Now, we are having issues with her trasitioning to a cup, while trying not to drool. Who knew she wouldn’t want to give up her bottle after trying to get her to take it for so long. This has been a challenge for sure. We will get there though.
We just came back from Faybree’s 2 year post transplant check up. I can’t beleive it has been 2 years. We didn’t get good news once again. Faybree has A1 rejection and B2 for inflammation. There are 3 levels for rejection and 4 levels for inflammation. A1 rejection they do not treat, they hope that her anti rejection drugs will take care of it over the course. As far as her inflammation, the doctors are not sure what the cause of this is. Which always makes me super nervous not knowing what it is, because how can we treat it if we don’t know. All in all, we will not be going back to St. Louis for a check up until another 6 months. We pray and hope that her rejection will go away. The last time we were there, 6 months ago in October she has A2 rejection and they treated it and it went down to A1 and it is still at A1. I guess we have to look at it on the positive side and say we are happy it hasn’t progressed. On a side note, rejection for her age is very rare so this is very scary for us. Not only that, they say the early on and more you have rejection it is possible for her to go into severe rejection. Just more to worry about. It is never a worry free zone around here, but I can tell you it is worth it when you have that beautiful child that giggles and smiles at you. That is what is worth it. It is like the smile is saying to you “thanks for giving me life”. It was all worth it. Every day and every moment is worth it all desite the obsticles we face.
UPDATE 2.6.09
An update is way over due. We are happy to report that things are going well. We couldn’t be more pleased with the progress Faybree has made. We have had bumps in the road, but that is to be expected. We are so blessed to have Faybree here each and every day. As many would say it is a challenge for what we are going through,but this is all we know and it becomes normal for us. We take the challenge as a gift. We are so lucky to be able to see her over come many milestones that have been placed against her. She is crawling all around and just about to walk. She is eating 3 meals by mouth and we are trying our hardest to get her off of her feeding tube. We still go to many doctor visits and get therapy 2 times a week, but it is showing how it is all worth it. Our biggest news is we celebrated Faybree’s 1st birthday on January 14th. It was such an amazing day. Overall, life is good as long as we have our Faybree.
UPDATE 4/28/08
For those who have not heard, FAYBREE HAD A SUCCESSFUL TRANSPLANT SURGERY ON SATURDAY NIGHT!!!! The procedure went well and she is currently recovering. This is still a very crucial time as they now have to assess how her body will react to the new organs. Please continue to pray for a speedy recovery. Thank you again for all of the thoughts and prayers.
UPDATE 4/21/08
Hello everyone, I wanted to give you all an update on the golf tournament that will be held on May 18th. As of today, we have sold out the tounament!! The response to this tournament has been enormous and we cannot thank you all enough. If anyone is interested in helping out as far as volunteering, please contact me or Kenny Birch. While all of the spots to play in the tournament are sold out, there are plenty of tee box and green sponsorships available. In addition, we are still seeking prizes, raffle, and auction items. Thank you again for all of your help and please feel free to contact us in regard to other ways to help out.
Thank you – Jay McFarlane
_______________________________________________________________
Faybree Jane Neufeld
HelpHOPELive South-Central Lung Transplant Fund
On January 14th, 2008, Andy and Nicole Neufeld welcomed their first child after more than a year of trying to conceive. Their daughter, Faybree Jane Neufeld, was born healthy and beautiful; sent home with the family who had prayed so hard for her arrival. Two short weeks later Faybree was rushed to the emergency room, barely breathing. After weeks of waiting and dozens of procedures, Faybree was diagnosed with Surfactant Disorder, an extremely rare genetic mutation known only as ABCA-3.
There is no cure for this disease. Hope lies in a double lung transplant and years of delicate follow-up care. Teams of doctors and researchers from across the country have been networking to make this happen and it looks like the healing hands of Washington University at The St. Louis Children’s Hospital can do it. The risks are great with this procedure, but the reward is much greater. This is Faybree’s only chance for survival.
Andy and Nicole are life-long residents of Seminole County in Central Florida. As stand-out students through their youth, they were given numerous opportunities to leave the Orlando area. They came back, deciding the community they love so much was the place to raise their own children. Now it’s time for that community to raise them up and come together for a very special cause.
The Neufeld’s have had to relocate to St. Louis for the foreseeable future in order for Faybree to receive the kind of treatment she deserves…the transplant that can save her life.
To help ease the financial burden on the Neufeld family, a fundraising campaign in Faybree’s honor has been established with HelpHOPELive for her uninsured transplant-related expenses. HelpHOPELive is a nonprofit organization that has been assisting the transplant community for nearly 30 years. Won’t you please consider a tax deductible donation?
Make checks payable to:
HelpHOPELive
Note in memo section:
In Honor of Faybree Neufeld
Send to:
HelpHOPELive
Two Radnor Corporate Center
100 Matsonford Road, Suite 100
Radnor, PA 19087
To make a credit card contribution, please call 800-642-8399 or click “Donate Now” below..
Thank you for your generosity and your prayers.
Jay McFarlane
(904)483-8947
Guestbook
June 24, 2009
Pnut, Nicole and Faybree;My family''s thoughts and prayers are with all of you. May God bless your family and especially your beautiful little girl. Stay positive and everything will be all right.
Love, Charles, Amanda and Jordan Mushalko
May 4, 2008
Praise God for Faybree your presious gift. Faybree is a miracle and has touched so many lives with her love. My prayers are with Faybree and your entire family daily.
Those who Hope in the Lord will renew their strengh. They will soar on the wings like eagles. Isaiah 40:31.
Susan Oates Chuluota Fl
April 28, 2008
We were so happy to read Faybree has her new lungs. God Bless all of you during this most diffucult time. You are all in our thoughts and prayers!
Chuck and Sandy Manning, Chuluota, Fl
April 23, 2008
Our thoughts and prayers are with all of you. Faybree is a very strong little princess! Children are God's gift to the world, and you all are truly blessed. Stay strong and have faith. We cannot wait for little miss Faybree to get well and get home!
The Ransones (Eric & Stephanie), Orlando, FL
April 23, 2008
Peanut, Nicole and Faybree,
We are praying for you all and your strength at this time! Please know that God never gives you more than you can handle!
"Then you will call, and the Lord will answer;
you will cry for help, and he will say: Here I am."
Isaiah 58:9
Bonnie Wickland (Braun) Tampa, FL
April 22, 2008
My thougths and prayers ,,, I will pray and think about Fabree every night .. NO you dont know me ,I will pray for you and your husband and family, as I got a phone call today from a friend ... of yours to ask if the 2 resturants I manage in NPB FLA would paritcitpate in a POKER RUN of course as my beautiful 25 year old JESSICA ANN HORAL has had 2 transplnats ...not as complicated as a 3 month old .. with lungs.. but for me it was.... she was diagnosed at 10yrs old.... she is heathly today that makes me happy ..one day at a time with her....(JESSICA) ANYTHING I CAN DO HELP ..You have me
Prayers and good faith ..Faybree is going to be fine
Debbie Crandell ....TIKI WATERFRONT SEA GRILL
debbie_tiki@msn.com 51-329-5060
caringbrige visit Jessica Horal
To Mom & Dad Keep the faith & family support it helps...GOD BLESS FAYBREE LOVE ME & JESS
April 18, 2008
Nicole and Peanut. My husband Henry had a double lung transplant 10 years ago this past February, and we had an account via NTAF which was really a financial blessing for us. Also, after many years of trying, we had our first child, son Blair, on January 20th this year. He is just 6 days younger than Faybree. Our hearts are in pain as we think of the distress and suffering you are going through. Your cause is near and dear to our hearts, and you are in ours and many of our friends and families prayers on a daily basis. We pray for strength, encouragement and peace for you both, and God's protection and sustenance on Faybree, as well as a set of healthy lungs in the very near future. God bless and protect you all.
Joanne and Hery Lancaster, Indiana
April 16, 2008
Peanut and Nicole, My heart aches for you. I wish there was some way to comfort you as you go through is trying time. Know that we are all praying for Faybree and you, all the time!
Love, Grandma Carol Bradenton, FL
April 16, 2008
God Bless all of you during this most diffucult time. I just spoke with Denise and she and Peanut are making reservations to fly to be with Baby Faybree tomorrow (4-16). Our entire family pray for Faybree to be well very, very soon. May God keep all of you in the palm of His hand. Our Love,
Judy and Terry Vasterling - Lake Mary, Florida
April 5, 2008
My thoughts and prayers are with you both and little Faybree.
Jordana (Magnicari) Isaacs, Oviedo FL
April 4, 2008
We miss and love you all so much. You are in our thoughts and prayers all the time. God is watching over our little angel. Faybree is such a fighter just like her mommy and daddy. Hang in there and know that we are all here for you. Keep having faith and continue to be strong. Lot of Love!
Love you always-Aunt Amanda and Uncle Tim, Winter Springs, FL
April 4, 2008
You are all in my thoughts and prayers! Keep believing and stay strong! xoxoxo
Robin Napier, Wakefield, MA
April 3, 2008
Know you are not alone and you have MANY people praying for all of you.
Jennifer Pates, Heathrow, FL
April 2, 2008
You will be in my thoughts and prayers. Stay strong.
Stephanie Noiseux, Clearwater, FL
April 2, 2008
Through Kelly & Jennifer and Casey, we have been advised of all your news. We are so happy that St. Louis welcomed Faybree and we know that they will do everything they can for her! Know that you are loved by our family and our friends who are all praying for you and Faybree.
The Willsons (Tom & Mary Beth), Roswell, GA
April 1, 2008
You each are in mine and my families prayers. I look for your updates daily and pray that Faybree is getting stronger. Thinking of you always.
Love, Doug and Natasha (Berk) Coughlan
March 27, 2008
I have Faybree and the entire family in my prayers every day.You have a lot of people praying for you and our prayer will be answered.
.
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Joann Abadie Orlando Fl.
March 26, 2008
We send our love and prayers to your precious family. You are all being very brave including sweet Faybree. We pray that God will do His Work
in your family, to keep you and Faybree strong and let the Miracles happen. We are so touched by your story and will hold you close in our hearts and in our prayers. What can we do for you...besides our prayers? Just ask. We love you,
the Lytles (Brenda, Charlie, and Chaz)
March 26, 2008
Peanut, Nicole and baby Faybree; God Bless you and keep you in his care. We pray for all of you during this difficult time. Little Faybree sounds like a fighter and she has many, many prayers going to our heavenly Father.
Judy and Terry Vasterling - Lake Mary, Florida
March 25, 2008
We're high school friends of Bobby and just heard about your sweet baby Faybree. Please know that you are and your entire family are in our thoughts and prayers.
Curt and Judi Dorn, Casselberry, Florida
March 24, 2008
I know I haven't seen you both in a long time...your family will be in my thoughts and prayers. Faybree is such a cutie:)
Adrienne Lovato(Mazar) Washington DC
March 22, 2008
I WILL PRAY FOR YOU ALL- YOU ARE IN GOD'S WONDERFUL HANDS!
BRIDGET LIDDLE, HUNTSVILLE, ALABAMA
March 22, 2008
My parents (Sandi and Steve) have always said what a special couple you are and we have been following Faybree's progress through their updates. You are all of the things they have said about you and more...amazing, amazing people and parents. We pray for your family and baby Faybree every day. She is a little angel. Please know that there are so many people out there that you have touched with your strength.
Love, Sharon and Chris DuMond, Orlando
March 21, 2008
Nicole and Peanut,
Faybree is in our constant thoughts and prayers. Know that God will keep her in his arms and whatever is His will, will be the best for her. Keep strong! Know that you have the love of family and friends to lean on.
All our love, Carol and Carl, Bradenton, FL
March 20, 2008
Nicole, Andy & Faybree,
You all are wonderful, strong people who are going through a tough time. With the support & love from everyone from everywhere Faybree will prevail & be a miracle child. You are missed and thought of 24/7!!! Don't forget to take care of yourselves as well. We will be here for you no matter what you need, just let us know!
Love, The Minnetto's (Matt, Mandy, Jillian, Brielle & Braden)
March 20, 2008
No matter the odds, no matter the circumstances, look to the Creator to see you through this and know the circle of people supporting you in prayer, Your entire family will be changed and strengthened through this trial adn we have faith in a happy outcome.
Joe and Charlotte White, Orange Park, Florida
March 20, 2008
My thoughts and prayers are with you
Jaimie Valdivia
March 20, 2008
I am a friend (through business) of Sandy's and am praying for your beautiful daughter and will keep you and your family in my prayers.
Laurie C. -Weichert Realtors Yates & Assoc., Tampa
March 20, 2008
We will be praying for your precious little girl. Keep up the attitude that she WILL fight through this and she WILL overcome. She sounds like a real fighter!
The Bell Family (friends with Rian and Chris Meadows), Tallahassee Florida
March 19, 2008
I just know that your little girl is in God's hands and that she will pull through stronger than ever! I will be checking your journal to follow her progress and will help as much as possible. You are in my daily prayers. Stay strong!
Emily (Schwarz) Alvers, Miami Beach, FL
March 19, 2008
Girls are born to fight I have learned from experience. I tried for 4 yrs to get prego & when Alexis was born they told me she had hip displaysia & was in braces non stop for 3 months until her hips could fully develop. Now you can't stop her. She's 6 & runs faster than my 10yr old son. So moral of the story is Faybree was born to survive anything & she will. Your family will be in our thoughts & prayers.
-The Arie Family(John, Tracy(Touchton), Tj & Alexis
March 19, 2008
I pray that God will continue to give each of you the strength you need. Faybree is so very beautiful and strong. The love we have for our children surpasses everything else in life. Trena and I have all of you in our thoughts and prayers daily. Love ya,
Lea Hastings and Trena Ferguson, Casselberry, FL
March 18, 2008
You are in our prayers. Having 5 grandchildren, I know that optimism and prayers are what guides you now. Knowing your friends are in your corner is a wonderful feeling and please know that even those who don't know you personally are praying for all of you.
Fran (Minnetto) Goodwin, Casselberry, FL
March 18, 2008
Peanut, Nicole and Family, Our thoughts and prayers are with all of you as you embark on a journey that no one should have to take. Stay strong in your faith and know that the Good Lord works miracles in different ways. There are many of us praying for Ms. Faybree & know that she will pull through this and make the medical teams scratch their heads! Be strong and know you are loved by many...
The DuFrene's (Kyle, Ashley, Nicole & Uncle K)
March 18, 2008
Our family is praying for your family.
"God is the light that shows us the way, for there is nothing that God cannot do."
-The Falks (Meghan (Dunn), Joey, Dylan & J.J.) Casselberry, FL
March 18, 2008
You are in my thoughts and prayers. May God bless the three of you with strength and healing.
Laurie Mooty, Orlando, FL
March 18, 2008
Faybee Jane is a true blessing! What a glorious gift from God.
Trust our Maker to see us all through this difficult time - and remember during this Easter season that you are not alone.
God is in control of today and all the tomorrows of Faybee's precious little life.
Be on the lookout for great miracles! Thank you for sharing your lives with us and helping our hearts to grow bigger. You are a great family in the DRH family!!!
Tom and Lisa Tyrrell, Chuluota, FL
March 17, 2008
We are all pulling for the Andy Neufield Family
thoughts and prayers-
Sharon Barber Orlando
March 17, 2008
I am a friend of your Aunt Sandy. She is a special person and I am sure that your Faybree is, too. Please know that I will be keeping her in my thoughts and prayers. God bless you all!
Linda Mitchell, Tampa, FL
March 17, 2008
My thoughts and prayers go out to you three during your times and tribulations. Faybree is strong just as her parents are and through the help of Our Father and his children, amazing things to come!!!
Love always.... Amber Warren (Knoxville, TN)
March 17, 2008
My thoughts and prayers are with you everyday, as are my families. Faybree is a fighter with amazing parents. Stay strong... love and miss you.
Love, Jamie Gorel, Nicholson, PA
March 16, 2008
She is amazing and so strong. I will pray for you guys daily.
Stefanie (Townley) Garrity, Destin, FL
March 15, 2008
You've got some great pictures of little Faybree on these websites! Her eyes - she looks so loving and wise, doesn't she? What a terrific soul you and Peanut have brought into the world. I am thinking of you guys and always wishing for the best. Remember that miracles happen every day, and she has a small army rooting for her.
Love, Mandy (Howard) Carozza
March 15, 2008
Uncle Mike and I have you all in our prayers, daily. I have Faybree's pictures at my office and on the Refrigerator door of fame. I do believe in miracles, and the power of prayer. I know it is hard to be so far away from your family and friends, but we are with you in spirit, always. If you need anything, don't hesitate to ask. We love you, and Faybree is a fighter, she has showed so much improvement, and is resting to gain the strength she needs to improve more. We love you!
Aunt Sandy & Uncle Mike
March 15, 2008
My hand is on your shoulder, my arms are hugging you, and the angels surrounding you are praying with me for your strength and precious Faybree's recovery.
Dolly Rolly, Winter Springs, FL
March 15, 2008
We are thinking and praying for you all. Stay strong and get home soon my two need their friend to come play with :)
Shane, Faith, Alexx, Lilly, Preston Clark
March 14, 2008
We love you guys and keep you in our constant thoughts and prayers! We look forward to seeing you home soon! Faybree's a little fighter!!!
Jackie Matray & Anthony Thermenos, Orlando
March 14, 2008
Nicole, Pnut and of course little miss Faybree. You are all in my thoughts and prayers every day. Miss Faybree your little picture is on my desk and phone.... I know Faybree is a fighter and a strong little baby. I love you guys and I will continue to keep you in my thoughts and prayers daily!!!
Love, Anne (aka Onion ) Orlando, FL
March 14, 2008
Andy/Nicole, We can only imagine the pain and heartache you are going through. Kristy has kept us informed and fwd many of your e-mails. Continue to be positive and with God's help your Little Lady will pull through this. Our thoughts and prayers are with you.
Carolyn and Gary Frost
The Frost's, Oviedo, FL
March 14, 2008
You are in our thoughts and prayers everyday!
Stay strong and trust in God. He is with you and Faybree!
Kristy, Josh & Summer Frost
March 14, 2008
Nicole and Andy,
I am praying for your beautiful family, may you feel the strength and support of God and your community of friends.
Laura Keysor, Sanford, FL
March 14, 2008
My family is praying for your family. There is no bond like one with your kids. Keep your head and hopes high- someone is watching out for you. We will keep you in our hearts.
Dawn, Joey, Jaiden and Anthony
March 14, 2008
We are thinking about you and your little baby girl Faybree; she is in good hands and she is a little fighter! Stay strong...so many people are thinking about her.
Rachel Brown Orlando, Florida
March 14, 2008
We pray every day for strength and healing for Miss Faybree. We love you all so much. We are always with you.
Love, Krystal Williams & Leo Mejia (Sanford, FL)
March 14, 2008
There are so many people praying for all of you. Some you know and by word of mouth many you don't. But we all have the same prayer,let little Faybree come home soon,healthy,happy and safe!Thinking of you always.
Linda, Don Kuhl & all of the boys, Winter Springs, Fl
March 14, 2008
Keep fighting and stay strong! You are doing so good! So many people, thoughts, and prayers are behind you. Much love to you all.
The Sullivans (E, T, L.L. and Jack) Orlando, FL
March 14, 2008
I know Faybree will be home very soon to start her new life with her friends Rachel Noelle & Giancarlo. My little Rachel prays every night for Faybree so, she can play with her.Faybree is our miracle baby and God will do his job.
I love you guys very much!
Te quiero mucho.
The Torres ( Rachel, Rachel Noelle, Giancarlo,& Flavio) Orlando, Fl
March 14, 2008
We are thinking about you guys constantly, our prayers are with all of you..Let us know how we can help....
Hector and Kristin Mejia, Denver, CO
March 14, 2008
I know you have only been gone a few days, but we miss you already and hope that it won't be long before we can hold your sweet angel again and she can breath easy once more. Our thoughts & prayers are with you and you know how to get in touch if there is anything you need us to do. Just hang in there a little longer & everything will work out, her guardian angel is watching over her!
Love you, Terri & Ted, Winter Springs, FL
March 13, 2008
We love you guys and are praying for Miss Faybree. She is such a fighter I know she is going to give everything she can to stay around to be with her loving parents. Faybree continue to gain that weight so that you can have your surgery and can come home soon.
Thinking of you always!
Love always,
The Wardrops (Brent, Kelly & Madison) Orlando,FL
March 12, 2008
My thought's and prayer's are with you guy's.
Love , bean ( Jeanie Crawford) Orlando . fl
Mail a Check
Make checks payable to:
Help Hope Live
Note in memo:
In honor of Faybree J Neufeld
Mail to:
Help Hope Live
2 Radnor Corporate Center
Suite 100
100 Matsonford Road
Radnor, PA 19087
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