NOTE: This article was published in the spring of 2013 to promote the 7th Annual Northeast Run.
For more information about the current Northeast Run, please refer to the main Northeast Run page here.
The 7th Annual Northeast Run is coming up fast, with just a few weeks left before registration closes. This run is a charity run; funds generated from raffle of prizes are donated to a charity every year.
When we began organizing this year's run, the discussion of which charity to focus upon for 2014 led to us straight to one of our own members who suffered a painful and challenging time in 2013.
I'd like to take a few minutes of your time to introduce you to a little girl named Fallon Jade Rilling as well as her father Bob, the Rilling family and tell you about Alveolar Capillary Dysplasia (ACD,) our target for fund raising in 2014.
Bob, please tell us a little bit about yourself
My name is Bob Rilling. I am 38 years old and was born and raised on Long Island NY. I have been a police officer here in Suffolk County since 2006 and currently assigned to the Highway Patrol Bureau with SCPD. My father is a retired SCPD Police Inspector and my brother is a police officer in Nassau County assigned to their "SWAT" Team (though they call it BSO and not SWAT), so law enforcement runs in the blood!
My beautiful wife Kristen and I started dating in 2004 and married in 2008. She works for the District Attorney's office here in Suffolk County as forensics auditor/investigator.
We had our first child, our son Avery in 2009 and in 2011 we began building our dream home while Kristen was pregnant with our second child, our daughter Harper who was born in June 2011.
We moved into our new home on Harper's first birthday in June 2012.
In October 2013 our third child, another beautiful girl named Fallon, was born with a very rare condition called ACD and passed away 11 days later and it has forever changed my life and myself as a person and a father. (I couldn't even write that last line without tears running from my eyes.) Any info you want to add about ACD is all on the fundraiser link. I just don't have it in me to type it right now...
If you don't mind, please tell us Fallon's story in your own words
Fallon was born on October 10th, 2013, at 4:44 am, and passed away on October 21st, 2013.
She was whisked away, minutes after being born, and the decision was made to send her to another hospital with an experienced NICU.
Less than 24 hours after she arrived there, she was moved yet again (police escort and all) to Morgan Stanley Children's Hospital in New York City because it had an ECMO machine (a very risky yet potentially life-saving heart and lung bypass machine for infants). She had minutes to live before being put on this ECMO machine. She fought extremely hard in her 11 days, battling everything thrown her way. We watched her strength and determination at every step. She showed us so much love and she taught us so much about love. She made us very proud. We watched her improve, and then decline again, much to the bafflement of the intelligent, knowledgeable, and professional team working on her. On the day she passed away, we knew the fight was over and we asked to hold her to say goodbye. She was unhooked from all of the tubes and wires that were on her every moment of her life, and we held her while she took her final breath; a moment we will never, ever forget. We did not know what happened to our beautiful daughter - or why. It wasn't until we got her final autopsy results that we (along with the MSCH team) finally found out what caused her to be taken away from us.
Can you tell us a little bit about Fallon's medical condition?
Fallon had an extremely rare condition called Alveolar Capillary Dysplasia with Misalignment of Pulmonary Veins (ACD/MPV). Briefly, it affects the development of the lungs and their blood vessels. The capillaries are improperly positioned within the walls of the alveoli and the number is drastically reduced, which impedes the exchange of O2 and CO2. Without a lung transplant, this condition is 100% fatal. It would be extremely unlikely for a baby to survive long enough, waiting for a donor (another infant) - and even if they did, it is even more unlikely that the baby would survive the transplant, during or after surgery.
What is ACD?
ACD/MPV is a very rare condition - and impossible to diagnose without a biopsy of the lung. Since its discovery in 1947, there are approximately 200 (known/reported) incidences, world-wide. It is so rare that very little is known about it, especially its cause. There is an Association (ACDA) - which consists of a group of parents throughout the world who had the unfortunate luck we did - losing a child to ACD. Their motto is "Searching for answers...hoping for a cure." What we are trying to do, here, is raise money to help their cause. In the spring of 2002, the ACDA established an ACD Research Account at NORD (National Organization for Rare Disorders), which means that any donation to NORD can be earmarked specifically for ACD research. NORD requires that a research account reach $33,500 before it will initiate the grant process to award research money to the medical community. Thanks to Fallon and her supporters.
Thank you Bob for sharing that difficult and moving story. Your fellow Northeasters are with you throughout this difficult healing process.
Retelling a difficult story means reliving it, and that can't be easy. Best wishes to the Rilling family and we salute you for your strength through these difficult times.
About Bob's FJ:
I bought my Trail Teams FJC Brand new with 9 miles on it in July of
2008. In Nov of 08 I was searching the internet and came across a very
cool but somewhat small at the time club called the FJ Northeasters. I
registered and then heard of a Northeast Run, on Easter weekend in
I signed up and went by myself not knowing what i was about to get
into. I met Pete (Braatz) and he stood out to me as a great man and
great character. Then I slowly met others and by the end of the
weekend I had made some really cool new friends. And though most of
them I only see once per year at the Northeast run, I cherish the
friendships that I have made. I have not missed a Northeast
"spring" run since my first one in 2009.
A cause for the Northeasters
I bought my Trail Teams FJC Brand new with 9 miles on it in July of 2008. In Nov of 08 I was searching the internet and came across a very cool but somewhat small at the time club called the FJ Northeasters. I registered and then heard of a Northeast Run, on Easter weekend in 2009.
I signed up and went by myself not knowing what i was about to get into. I met Pete (Braatz) and he stood out to me as a great man and great character. Then I slowly met others and by the end of the weekend I had made some really cool new friends. And though most of them I only see once per year at the Northeast run, I cherish the friendships that I have made. I have not missed a Northeast "spring" run since my first one in 2009.
We're Northeasters. We come from everywhere; From Montreal, Quebec to South Carolina. From Ohio to Rhode Island. From New Brunswick to New York City. From New Jersey to New Hampshire. Toronto, Vermont, Virginia, Maine, Delaware, Connnecticut, Maryland, Pennsylvania, West Virginia and everywhere else.
We're coming from all over to band together to do what we can to help the Rilling family get through their healing and contribute to ACD research in the hopes that another family does not have to be as strong as the Rillings have had to be.
The focus of our fund raising efforts this year is to make a donation
to ACD research in Fallon Jade's name via a GoFundMe project the
Rilling family set up.
About the FJ Northeasters
The FJ Northeasters is an off-road club covering the Northeast United States of America. Our annual fund-raising gathering, which happens every spring, is called the Northeast Run. This is our 7th year gathering for this and the event has grown larger year by year. In 2013, we counted over 110 registered drivers at the event. Every year we choose a charity to dedicate our efforts to in an attempt to raise funds and increase awareness.
For example, in 2013 we held a charity raffle dinner for the Make-A-Wish foundation, whom we donated $3,000.00 to. The charity raffle dinner was so full of great prizes it took over two hours to raffle it all off and there wasn't an empty stomach in the house.
The organization has done this for the last 6 years.
Now we're in our 7th year, and we're changing gears to focus on a new charity effort; one of our own is in need and we're stepping up to be there not only for his family, but for any other families that may face this in the future.
Learn more about the FJ Northeasters on the rest of our site here:
About the FJ Northeasters
How can you help the Rillings & families like them?
- Make a donation to the Rilling family via their GoFundMe page here:
- Learn more about the Alveolar Capillary Dysplasia (ACD) Association here:
- Learn more about ACD itself here:
Interested in being a part of this?
Get in your 4x4 and register for the 2014 Northeast Run. All proceeds go to the Rilling family and ACD Research.
Stock or built, Toyota or Jeep or Honda or Chevy it doesn't matter; come meet our community and see why it's going strong.
This article put together by Richard LaRusso & Bob Rilling for the FJ Northeasters. Feel free to share the link, but please do not quote without permission. Please do not link directly to the images on this page. All images are the property of Bob Rilling with permission for FJ Northeasters to use and may not be duplicated.