Faybree J Neufeld
NTAF Southeast Lung Transplant Fund
Chesterfield, VA
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
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Faybree Jane Neufeld
NTAF 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
Andy and Nicole are life-long residents of
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 the National Transplant Assistance Fund (NTAF) for her uninsured transplant-related expenses. NTAF is a nonprofit organization that has been assisting the transplant community for 25 years. Won’t you please consider a tax deductible donation?
Make checks payable to:
NTAF Southeast Lung Transplant Fund
Note in memo section:
In Honor of Faybree Neufeld
Send to:
NTAF
To make a credit card contribution, please call 800-642-8399 or click “Contribute Now” below. To email this page directly to others in your community, who might wish to learn about Faybree’s campaign, click the email button and type in as many email addresses as you wish.
Thank you for your generosity and your prayers.
Jay McFarlane
(904)483-8947
On Sunday, May 18, 2008, there will be a benefit golf tournament at Deer Run Golf and Country Club in honor of Team Faybree! All money raised will go towards helping the Neufeld family with their rising hospital and relocation expenses. Please save this date on your calendar. Join the family and friends of Faybree on this most special day; a day when all of us can give our best for Faybree. To get involved, please call Kenny Birch (561)596-5033.
