For three long sleepless weeks Brayden was known as the mystery baby in the NICU and then they finally got a diagnosis ABCA-3 surfactant deficiency. It was the opposite of what I was hoping for but deep down I knew that this was the results they were going to get back. One of the doctors on the team, which had since this once before in a little girl were he was from, said that one of his options is a double-lung transplant but he wasn’t for sure if this was the best idea for little Brayden. He was looking at the statistics for people who went through lung transplants and was thinking maybe just because it’s not a cure that it shouldn’t be done. He wouldn’t tell me if there were any other options for Brayden. So I confronted one of the other doctors on the team and he said the only other option was to keep Brayden on the steroids and the ventilator as long as he could. I couldn’t even believe they thought that was a good option but everyone has their own opinions.

They set up a meeting with me and the transplant team to go over everything about lung transplants. Over the next couple of weeks Brayden went through many different tests to see if he was a good candidate for a double-lung transplant. He passed all the tests with flying colors and I was so glad, I was terrified that the team would come back and tell me that they couldn’t do transplant for whatever reason. Other than having lungs that don’t work he is a healthy baby boy. Brayden is currently waiting for a heart-lung transplant at Nationwide Children’s Hospital in Columbus, Ohio. I ended up being let go of my job because I was only able to take a three month leave. I have been up at children’s with Brayden since he was brought up here. Except for a couple weekends I go and spend with Bryleigh. I couldn’t see myself going back to work and leaving Brayden at children’s by himself.  

 It felt like I was thrown into an alternate universe were no one understood what I was going through. There are some people who think that going down the road of a lung transplant is not the right thing for me to do for Brayden. Just because I am a single mother of two, Brayden and his older sister Bryleigh. Yes it may be a hard road to take but I wouldn’t have done this if I didn’t think I couldn’t handle it. Brayden should have a chance at life I don’t think it would have been right to just give up if there was an option for him. When I found out his diagnosis all I could think about is why me, why did I was I chosen to have Brayden with this disease. I had a good friend tell me that I wouldn’t have been chosen for this if I wasn’t strong enough to handle this. I think those words have kept me going for most of this. He truly doesn’t know how much that simple little sentence helped me out.

I felt so alone when all this started not having anyone around going through the same situation. I have family and friends but it’s not the same. When I was doing research on lung transplants I came across the Fays friends website. Just knowing that there is someone else who has been through this and is still fighting the odds of transplant made a big weight come off my chest. This is a wonderful thing Nicole is doing for others going through lung transplant. She has been very helpful for someone to talk through all this because she understands everything I am going through. Also a big thanks for the Fays friends bag that was great.

Brayden is a very strong little fighter please keep Brayden in everyone’s prayers for a transplant to come soon.

 xoxo

https://www.facebook.com/pages/Braydens-BrigadeBrayden-Matheu/124961737637611

Amanda, Brayden, and Bryleigh

Submitted by :Kim Anderson and Chris Bush (Tuesday, 24 May 2011 22:07)

Ronan on the artificial lung

 He was put on ECMO, a type of heart-lung bypass, and then underwent an 8-hour surgery to put him on an artificial lung, which the doctors feel give him the best chance for long-term stability to wait for a lung transplant. This has never been done on a newborn before, so there is a lot to learn and much uncertainty as we move forward.  While undergoing this procedure the doctors did a lung biopsy and confirmed that Ronan does have ACD like Phoebe did.  Not unexpected, but still hard to hear.  This did confirm for us that we are on the right path, and that transplant is his only treatment option.

Ronan is a fighter and we are committed to giving him this chance at life. We know the journey is a long one and it is not an easy path, but we are grateful for the love and support of family and friends as we navigate the world of lung transplant.

Lillian Rose Lay

Lilliann Rose Lay was born July 7, 2009. At first she seemed like a normal, happy, healthy little girl. At the age of three months she began to have problems gaining weight. She was admitted to Arkansas Children's Hospital in October 2009. At the age of six months she was diagnosed with a rare lung disease called ABCA3 gene mutation. Basically this disease robs her lungs of the ability to produce the substance that should keep her lungs moist. Without this substance her lungs become stiff and are no longer able to inflate or deflate.
There is no cure.  This tiny person has spent over half of her life in hospitals. Her disease has gotten progressively worse and she now has only the top one third of her lungs working. 

 
On April 8, 2011 Lilly was flown to St. Louis Children's Hospital to be evaluated for a double lung transplant. She has been accepted for the procedure. The transplant is not a cure, but it's a way for her to live a more normal, longer life.

Without the transplant this beautiful, little red haired, blue eyed angel will be taken from this world in approximately 6 months per doctors. 

The lung transplant will cost approximately $600,000. Her mother and father are moving to St. Louis to be with her and will have to stay there for at least a year at an estimated cost of another $30,000 plus. 

Lillian and her parents

You can send a persoanl donation to:

Lillian Rose Lay Fund

 First Security Bank

1801 W Dewitt Henry Drive

Beebe, AR 72012

Jet is almost ONE year's old and will be celebrating his birthday April 29th, 2011. What a year to celebrate for sure. In just one short year, you will never believe what this sweet little boy has been through.  By looking at him in this picture you would never know that anything is awrong with him.  This is the beauty of true strength from a child.  They sure can show us adults what strength truly is. 

Jet just recently recieved a "double lung transplant' the beginning of April 2011 at St. Louis Children's Hospital.  

Elizabeth was born on December, 30 2009. She has required oxygen or ventilator support to breath since birth. She has been diagnosed with pulmonary hypertension, pulmonary interstitial glycogen sis, abnormal lung growth, failure to thrive, global developmental delays, innominate artery syndrome artery syndrome, and a neuronal migration disorder. She has spent the majority of her life in a hospital. She has been inpatient at TC Thompson, Vanderbilt and is currently at Texas Children's Hospital.

On December 17, 2010 she was flow to Texas for a lung transplant evaluation. She is currently waiting for donor lungs as of February 9^th, 2011.

Elizabeth’s family has planned a Donor Awareness Relay for April in honor of awareness month and there is a site where donations can be made that go directly to a trust fund set up to be used for medical/travel expenses for Elizabeth and her family. Please visit the link below if you are interested in donating...
http://www.active.com/donate/ElizabethJetton

Many of my family members have told me that my destiny is to write a book on “How to Survive a Double Lung Transplant”.  But I question most days if I’m actually ‘surviving’.  The situation before, during and after transplant is tedious, exhausting, confusing, frustrating, agonizing and believe it or not—rewarding.  What was not an option for infants 20 years ago is now the norm for those who qualify.  And to me, it’s an amazing miracle to receive a transplant but with it, comes many questions, concerns and unknowns.  The ONLY way I could have survived our situation so far was with Fay’s Friends. 

My husband and I and our two children, Wrenn and Tanner, came to St. Louis, Missouri to Children’s Hospital from Orlando, Florida last July. None of us had ever visited the mid-west and never anticipated landing here for medical reasons. 

On the day my daughter was admitted to the St. Louis NICU, a beautiful package welcomed us.  It was from Fay’s Friends and was filled with so many SOS kits, accessories for my daughter (gender specific, which was a nice treat in what was such a stressful time), tips on how to get around an unfamiliar city, information on Wrenn’s transplant, numbers and websites, and sample supplies: Not to mention several gift certificates, toiletries, stationary and comfort buddies for Wrenn. Christmas in July is what I remember saying!

What I found amazingly helpful is that Fay’s Friends had information relating to ALL avenues of what we were going through.  Only parents with a special needs child, adults caring for a sick parent, or families living the hospital life would understand that there are things you need to have and need to KNOW, in order to ‘survive’ the days and nights. Hospital hours are long, especially when a child is involved.  Having a sibling made it even more difficult because we were pulled in many directions tending to both children. 

The Ronald McDonald house is a wonderful entity but Fay’s Friends was the resource we turned to more often when our time, as well as our energy, was limited.  Everything we were experiencing was new and bundled into a tight schedule.  With an infant getting sicker each day, I grew more worried about the future of our family and how we would all adjust to whatever the outcome.  The quality of information from Fay’s Friends and the ability to talk to Nicole (founder of Fay's Friends) when ever we needed gave us the ease to get through each day leading up to transplant, react to what might happen during, and explained in detail how to plan for the future in taking care of our little girls needs.

I remember asking Nicole Neufeld, “How in the world did you have time to put together such an awesome package?”  She said it all started with her stay in St. Louis and that she wanted to help others going through the same situation.

What I know is that when Nicole Neufeld went through the transplant process, she had little resources to lean on.  I’m sure that sparked her passion in starting Fay’s Friends—Thank Goodness she did! 

I truly hope that additional organizations become a participant with Fay’s Friends.  They will initiate positive support for transplant families, state their awareness within the local community and instill a strong bridge into the medical industry.

You never know what you’re capable of until you’re faced with the unknown, which usually, and in this particular situation, brought out the best in the Neufelds.  Nicole has reached out to families all over the world via Fay’s Friends and I know she will continue to grow and do many more great things for future transplant recipients.

 Xoxo The Parris Family