The participants of this ArchiTalks blog post series are asking you to help a friend of ours who is dealing with a family tragedy. Rusty Long is an Architect based out of Portsmouth, Virginia, whose son Matthew is fighting for his life. Here is Matthew’s story, as told by his Dad, Rusty:
Matthew Long was born May 29th, 2013, happy, and seemingly healthy. Less than two days later his mother and I found ourselves in an neonatal intensive care unit waiting room, listening to a rushed intensive care doctor explain how our son needed immediate dialysis to save his life. The disease, he briefly explained, was one of a group of disorders called Urea Cycle Disorders, which impact the way the body breaks down protein. We later discovered that Matthew’s particular variant is called OTC Deficiency, a particularly severe form of it in fact, which results in a rapid rise of ammonia in the blood, called hyperammonemia, resulting in devastating neurological damage. This form of OTC is so severe, Matthew has virtually no peers who have survived it. Once the immediate crisis was arrested, we came to find out more about the disease and the impact of this initial event.
The disease is inherited, and the damage is permanent. Treatment consists of a combination of medications, low protein medical diet, and ultimately a liver transplant. Matthew was fortunate to experience no additional hyperammonemic events in the following fifteen months of life, and had a liver transplant on August 24th, 2014. The cure for the disease, a transplant, isn’t so much a cure as trading one condition for another. While we will never risk the chance of another ammonia spike, Matthew is on a half a dozen or more medications at any given time to avoid rejection. Despite these challenges, intensive daily therapy for cerebral palsy (a result of the initial damage), limited motor function, and various other challenges along the way, our son is remarkably happy and has changed all our lives for the better. He’s taught us to be stronger than we ever thought possible, to have faith beyond human understanding, and the immeasurable value of life.
The #ArchiTalks community is hoping to raise $5,500 to help Architect Rusty Long and his family reach their financial goal on HelpHopeLive.org. If each reader of this post contributes a small amount, our impact will be massive and we can make a difference for Matthew’s family. Click here now and donate $2.00.
New Year, A New Hope
2015…what a year and I am kind of glad its behind me. There were some pretty amazing highs: starting my first residential build with Dig Architecture, working with some amazing clients and builders, family vacations, watching my kids grow, developing friendships, Star Wars, etc. For all the highs, there were a few lows that made themselves an endless distraction. I bet you never considered being sued as the architect of record for project you had no involvement in…you can be (it sucks), and it may take the better part of a year before you to get the plaintiff to realize that and release you from the suit. Our family said goodbye to our first dog, Rocky. My first company, Cote Renard Architecture stopped doing business after seven years, the founding shareholders have moved onto new ventures that better fit their individual career goals.
Every year we all have hopes and dreams for what will be and what we will make of ourselves. Some of it lasts, others (like gym memberships) seem like a good idea, but fall to the side pretty quick. My New Hope in 2016 is to define myself and my business (lofty goal). I have launched Renard Architecture (I know, super creative), a company that is mine. The design side of Cote Renard was always more individual, but the business side was a joint venture. I need to dedicate myself to embracing the business side and making it work in conjunction with the design side. This is something I have taken for granted in the past, never really questioning any methods. I look forward to taking full advantage of a lot of great resources, most namely the Entrepreneur Architect Academy (thanks Marica). I look forward to learning a lot.
I am also excited to bring all of what I am learning in the field with Dig to my architecture practice. Every architect should build at least one structure for a client early in their career. Diving into this may best be a blog post for another day. But seriously, find a great client to work with and build what you have designed for them! This year has so much promise already. I look forward to binging my commitment to my craft into both my architecture and design/build studio.
That was a lot about me, right? Seems more like a mission statement or an affirmation than a blog post of useful information. Maybe it will just be something I need to read every morning. But, then again having read this yourself, you are responsible, you are a watchdog. Hope won’t be as useless as that gym membership when February rolls around (I did get a good deal this year).
It took me all afternoon to write this, I got distracted. My son was finally introduced to the world of Star Wars. Today he watched Episode IV – A New Hope. While I tried to get some work done, I couldn’t help but to get sucked in and before long we were sitting on the couch together – wide eyed, watching the Galaxy change. At least I got a title for this post out of those two hours.
Check out the rest of the ArchiTalks crew:
Enoch Sears – Business of Architecture (@businessofarch)
New Year, New Community on Business of Architecture
Bob Borson – Life of An Architect (@bobborson)
Matthew Stanfield – FiELD9: architecture (@FiELD9arch)
New Year, New CAD
Marica McKeel – Studio MM (@ArchitectMM)
New Year, New Adventures
Lee Calisti, AIA – Think Architect (@LeeCalisti)
new race new year new start
Mark R. LePage – Entrepreneur Architect (@EntreArchitect)
New Year. New Budget.
Lora Teagarden – L² Design, LLC (@L2DesignLLC)
New Year, New Goals
Collier Ward – One More Story (@BuildingContent)
New Year, New Business
Jes Stafford – Modus Operandi Design (@modarchitect)
New Year. New Gear.
Cindy Black – Rick & Cindy Black Architects (*)
New Year, New Casita
Eric T. Faulkner – Rock Talk (@wishingrockhome)
New Year, New Underwear
Rosa Sheng – Equity by Design (@EquityxDesign)
New Year, New Era
Michele Grace Hottel – Michele Grace Hottel, Architect (@mghottel)
“new year, new _____”
Meghana Joshi – IRA Consultants, LLC (@MeghanaIRA)
New Year, New Plan
Amy Kalar – ArchiMom (@AmyKalar)
New Year, New Adventures
Michael Riscica – Young Architect (@YoungArchitxPDX)
New Year, New Life!
Stephen Ramos – BUILDINGS ARE COOL (@sramos_BAC)
New Year, New Home
brady ernst – Soapbox Architect (@bradyernstAIA)
New Year, New Adult Architect
Brian Paletz – The Emerging Architect (@bpaletz)
A Little Premature
Eric Wittman – intern[life] (@rico_w)
new year, new [engagement]
Sharon George – Architecture By George (@sharonraigeorge)
New Year, New Business
Brinn Miracle – Architangent (@simplybrinn)
New Year, New Perspective
Emily Grandstaff-Rice – Emily Grandstaff-Rice AIA (@egraia)
The New New
Jarod Hall – di’velept (@divelept)
New Year New Reality
Anthony Richardson – That Architecture Student (@anth_rich)
New Year New Desk
Greg Croft – Sage Leaf Group (@croft_gregory)
New Year, New Goals
Jeffrey A Pelletier – Board & Vellum (@boardandvellum)
New Year New Office
Aaron Bowman – Product & Process (@PP_Podcast)
New Year, More Change
Kyu Young Kim – Palo Alto Design Studio (@sokokyu)
New Year, New Office Space
Jared W. Smith – Architect OWL (@ArchitectOWL)
New Year, New Reflection
Rusty Long – Rusty Long, Architect (@rustylong)
New Year, New Direction