Go the Extra Mile for PWS!!

We are the Maczkos: John, Catt (me), Julia (16), Jack (13) and Thomas Jersey (just turned five and has PWS by UPD).

Thomas is one of those kids who spent the first two months of life in NICUs. I know many of you are familiar with how that throws you – your perspective, your family, your schedule, your life -out of whack. Leaving the hospital without your baby… it’s just not right! Add that to the diagnosis of PWS & you’ve got a recipe for disaster if you’re not connected and know to guard your heart.

It was during that two months of splitting our time (going to visit Thomas in the NICU and taking care of our other children) that one of us discovered FPWR in our never-ending search for more answers, more hope. This was IT! We’d found it!!! 

So we got connected, listened, read, appreciated, admired and were inspired by countless families doing fundraisers, reading research results, suggesting areas that needed research, hunting online for the latest most promising ideas, and coming up with our own (at times off-the-wall) directions that research could go.

And we stayed there. Watching… as if from afar. John settled in to staying home with Tommy, making sure each and every therapist and nurse did their job correctly. We discovered Dr. Morris Angulo and got Thomas on growth hormone (GH) by six months. We feared daily for our beautiful baby’s future. We remained vigilant hunting for answers, ideas, solutions... but honestly, a dread began to settle in. We still did TV interviews, we were politically active when New York state nearly made it impossible for our kids to obtain GH, we attended the amazing first Hike the Hill with FPWR (wow, that was absolutely incredible!)… Yet, we had done nothing to raise research funding.

And life continued. Our kids kept growing up. Tommy walked at two, has been on horseback since he was 1.5 (in hippotherapy), and has had a full therapy load  - PT, OT & ST - since the day he came home from the hospital. He has had surgery to bring down his testicles, remove his tonsils and adenoids, and to release his lip and tongue frenulum. He has slept in an oxygen tent since 11 months old, when a sleep study discovered significant apnea. He has been seen repeatedly for suspected seizure activity (all to no avail), has been sedated twice for MRI’s, had multiple x-rays to assess 72-degree S spinal curve…. And through all this, not once have we done a thing to raise research funds to find the cure to the hunger that has just now reared its very ugly head….

A month ago was the very first time our beautiful baby boy told us – after a lovely Sunday meal at a favorite Greek diner, with a very confused tone in his voice, “I still hungry. Mom. Mom. Mom! (confused look on his face) I still hungry. Hungry. MOM!!!”

I was as calm as possible (this happened in public!) assuring him we were all done, and that his snack was only a few hours away…. Jack and Julia and I went out to the parking lot – and left John to ‘daddy-power’ him out of there. The other foot fell. This is almost a daily occurrence now. Thomas just turned five years old. This precious child, who weighs in at nearly 80 lbs. on 800-900 calories a day.

OK...back up nine months. I got an afternoon phone call from a cheerful, smart, friendly voice, who tells me her baby girl, who is 2 years, 3 months old was just diagnosed with PWS, and we share the same pediatrician!!! It was Rachel Johnson!! Thank God for the Johnsons!!! They live eight minutes from our house – and Rachel & Shawn are absolutely not taking no for an answer!!! They immediately agreed to a join us for a TV interview and we’ve been to each other’s homes many times now. The Johnsons went straight to the FPWR Conference last September. Thomas and their daughter Ellie are friends – it’s so cool!!

And the very best thing: We have a run in two weeks!!!! Rachel jumped straight in and began planning a run!! She’s one of those running types – I’ll never be one, but I can cheerlead and walk!! The response we are getting from our community is incredible. People I’d never have expected to help are saying “yes” – they really want to!! They are all saying “yes” to GO THE EXTRA MILE 4PWS!!! 

Can you imagine how I feel!!?? Five years of nothing...then I meet Rachel, Shawn & Ellie & BOOM, we’ve got a real run!! We’re actually doing something!!! When I first received Tommy’s diagnosis, I really, truly knew with ever fiber in my being that God has that cure out there - and it’s our job to find it. That knowledge has not diminished over these last five years. BUT, I’ve allowed the seemingly never-ending barrage of ‘issues’ to block me at every turn.

NO MORE!!!   

And now of course, as the whole thing approaches, I keep thinking: “We could have done this. It’s not that hard once you begin!” And it’s SO worth it!!!

I wholeheartedly encourage each and every family to go ahead and jump in! Just set a date and stick to it. We learned last weekend at the New York state PWS Alliance Conference that the first year of an event is where all the details get laid out – you improve, correct, edit as you go. The First Year, that’s where we are, 1.5 weeks from our first year’s event. We – the Maczkos – are actually doing something to raise funding for research for that Blasted Cure!!!

GO THE EXTRA MILE 4PWS!!!