Extending Your Hand the Nonprofit Way

Call: (855) 437-6350
110 Waterford Lane, Georgetown, TX 78628-6905


This Newsletter is to keep you updated on past and current benefits and other causes and events we have chosen to be a part of. Check here to see if we will be hosting or participating in an event in your area! We love working with others interested in helping children with OI and other debilitating childhood diseases, if you know of any cause or event that our foundation should partner with use our Contact Us page to let us know. 


Helping Mitchell Mielnik - URGENT

High school is a hard place. At first, I had only a small group of friends there, because even at a place like Hume Fogg Academic Magnet High, cliques are a constant presence. I hale from a middle school, West End Middle School to be exact, from which very few Hume Fogg students came. I had to start completely anew, only accruing about 4 semi-close friends and a small group of Band acquaintances.

This year, I met an extraordinary group of guys in my chemistry class. All of them were smart, sure, but they were amazing in an even more impactful light. When there would be a substitute for the day (and during the last week or so of school), they would set up the X-Box and the overhead projector (with Mr. Gilman, our teacher's, permission from the day before). On it, they would play an old, beat-up copy of FIFA (from 2010), Electronic Arts' take on soccer simulation, and NHL15, EA's hockey simulator. At first, I just sat in the back of the room and watched, not sure how to insert myself in the fun. I love video games, and sports (I'm not in any sense of the word a typical teenaged girl), but I was nervous because of how hard it'd been so far to make (and keep) friends in high school. It had seemed that the sweet groups of boys I had grown up with were changing faster than I could've imagined possible. However, towards the end of the year, I asked Mr. Gilman if I could play. He brought me up to the front of the room and said,

"Fiona's got next game, guys."

They all said okay. I had to go the next day because class ended before the current game was over, but that was okay. That next day, I played against Mitchell Mielnik. I'd never played FIFA before, or even really watched it aside from the times I'd spectated their games from the back of the class, but Mitchell didn't mind that. I only lost by one point, during a normal-length game.

Feeling pretty great about myself, I said "I guess I'm not that bad then, huh Mitchell?"

He gave me a high-five and said, "I guess not. Good game."

He walked out of the room with the rest of the boys (the day was over by then), and I lingered for a moment to gather my things.

I said, "How about that, Mr. Gilman?"

He replied, "Just so you know, Mitchell's really great at that game. I can't even beat him - I think he beat me by.. maybe 4 points last time we played? He was being nice, and trying to let you learn. It was really sweet."

What Mitchell did that day was a small gesture, but it had a big impact on me. From then on, I was always at the front playing with them, or participating in whatever hijinks they'd planned. I didn't sit at the back of the class by myself, reading or doing homework anymore. In the past, that was almost always my role - to sit in the back, or under the slide outside, or on the sidelines, by myself, reading alone while the others played, talked and had a great time. I didn't always hate it, but it felt so great to finally be accepted by the group of people who's approval I'd saught subconsciously for what was essentially my entire childhood. He continued to include me whenever the group was together, calling me from the back when I drifted away. It was a debt I didn't feel I could ever repay.

Just today, I heard that Mitchell was in the hospital with severe heart problems. Upon further investigation, he'd been admitted to the ER at Summit Hospital on Wednesday, June 3rd and had been transferred to Vanderbilt Children's Hospital later that day. Once at Vanderbilt, he'd been placed on an ECMO (Extracorporeal Membrane Oxygenation), a machine which oxygenates blood and filters out carbon dioxide from the blood (the same way lungs would normally) which would take over for his heart while his liver, kidneys, lungs and heart attempted to recover. He was placed on a slew of medications in an attempt to get his vitals back to a desirable range while he rested. Cardiologists later determined that Mitchell had some form of genetically inherited cardiomyopathy (heart muscle disease) which had possibly been revealed by a stomach virus that was going around at the time. Mitchell came down with symptoms about a week prior, peaking on Wednesday (when he went to the hospital). By the 5th, he had to have a heart catheter implanted because his heart wasn't pumping properly and his prognosis demanded a VaD (Ventricular Assistance Device) implant. He was having continuous problems with his liver and kidneys (among other things) before those surgeries even ensued. After VaD surgery, he continued to have even worser kidney, liver and lung function than before with only some, steady improvement. He missed taking the ACT and a college visit during his struggles. He had to go into surgery another time to clear fluid buildup around his heart, whereafter he had a lung-clearing procedure, an internal bleeding scare, more kidney problems and a myriad of other miscellaneous issues. All of that, and he still isn't eligible for a heart transplant, though he's at the top of the list. After a bit of recovery, he started to become more responsive and was getting stronger, but then, he had to go into yet another surgery on Father's day, as cruel as that sounds, because the ECMO was inhibiting the function of one of his VaDs, which had a detrimental effect on his kidneys and liver. The next day, one of his VaD devices was malfunctioning and he was bleeding internally, so he had to into open-heart surgery yet again for what became a VaD replacement, a clean-up job and an internal bleeding healing session. And to add to the chaos of it all, as they were taking him to the OR, a tube on the ECMO came open and he had to have a transfusion. He is trying to recover slowly now, but it will likely be days before any major progress is made. Hopefully there won't be more hiccups before then.

When I first read all of this, my initial reaction was to be really frightened. Mitchell was such a sweet kid, and he didn't deserve any of this. That lead me towards being angry. To thinking that the worst things always happen to the best people. Finally, I realized that I wanted to help him any way I could. I realized how sad I would be if he didn't pull through, how much of a loss that would be. I wanted him and his family to know I was there for them, that I was praying, that I was doing everything I could to help.

I write all of this to ask for your prayers on behalf of the Mielnik family, because without Mitchell, I and so many others would be at a great loss. In total, Mitchell has had 4 surgeries, many other procedures, will have to have an open-heart transplant surgery and will be on medication for the remainder of his life. I am very blessed to have such a wonderful foundation that helps with my medical needs, from my back surgery to my many rodding surgeries. I would like to now ask that if you are able, you extend this wonderful blessing to this humble, sweet, kind and wonderful kid. His family has started a GoFundMe campaign to raise money to help pay for his numerous procedures, continued medication, major surgeries and hospital time -- it can be found here (http://www.gofundme.com/mitchell18). I urge all of you to please, consider donating to this VERY deserving cause, because by supporting him, you show me your support as well. If you would like to stay updated on this situation, I encourage everyone to visit (and keep visiting) the CaringBridge website his Mom set up (http://www.caringbridge.org/visit/mitchellmielnik/) for continual updates written by Mrs. Mielnik on a daily basis. I am working as hard as I can to push for the Foundation to donate to Mitchell's family in their time of need, so keep that in your thoughts and sent some positivity my way as I make his case to the Financial Board. Fingers crossed! Thank you for your time, and please do show your support if you are able.


The Center for Courageous Kids

We are really pleased to announce our partnership with the Center for Courageous Kids in Scottsville, KY, a medical camp for children with chronic or life threatening illnesses.   They are sponsoring an O.I. weekend in November, 2015 free to children and their families, and the Fiona Rose Foundation is creating a "Fiona Fuel Fund" which will help the families travel to Scottsville.   The camp itself  is totally free to the families but they have to get there.  Fiona attended the camp a couple of years ago and had a wonderful time, and the parents get an opportunity to visit with other O.I. parents and discuss treatments, and their partiucular experiences.   It is especially useful for parents with young O.I. children to benefit from the the experience of parents who have dealt with it long term.  


Helping Children with O.I.

Thanks to the success of our Trail Ride this past summer we have been able to help Ryker Curtis, a two year old boy living in Nashville, TN with expenses relating to his upcoming surgery in Omaha, NE in  early December.   Ryker was born with 18 fractures and has broken his arms approximately twice a month in the last year.   He will be able to get his right arm and right tibia rodded with this surgery.   We have also been able to help Jacob Becerra (4) with "out of pocket" expenses for pamidronate infusion.   He lives in The Woodlands, TX and thanks to Capitol Area Quarter Horse Association for being a sponsor last year to make this possible.


It happened again...

Hi. It's me again (Fiona not Diana this time). I'm writing to give you an update and to share somewhat solumn news. I have broken my arm again.

I was on vacation with my Mom's family in Pottsboro, Texas when it happened. We were having a family reunion of sorts at this little cabin my great-grandfather built on Lake Texoma. It happened on Friday night, July 25, around 11:15 at night. My uncle and I were fishing, cat fishing, under the stars, having a great time, and then we realized that it was kind of late and dinner was probably nearly done. (We have dinner kind of late up there so this is not atypical.) We thought it might be a good idea to head up to the cabin and see what everyone else was doing, so we made our way up the hill. There was this log about halfway up that hill and I guess my uncle didn't see it in time, and his foot got caught, and he tripped while carrying me and we both fell. We went directly to Texoma Medical Center (my mom, grandmother, and uncle). They gave me extensive pain medication to control the pain and then I was transferred to Dallas Children's Hospital in Dallas, Texas. There, they X-rayed my arm, told me it was my right humerus, and that it was badly displaced. They set the bone at Dallas children's shortly after, and by the morning, or rather Saturday evening around eight, I finally came to. I stayed in the hospital to recover from extensive pain medication and nausea until Sunday at around 1:30 PM. That about brings you up to speed.

Of course all of this is awful, but I'm doing okay. This is happened before of course, it's not like this is a brand-new wound, but as always, it seems to have been reopened. It was just such a shock, you know? You go from fishing on the beach under the stars, eating cheese puffs, and having a delightful conversation, might I say, with one of your favorite people on earth, to being rushed to Dallas children's in an ambulance because of a badly displaced humorous. It's really more hard to wrap my mind around anything. Of course it's been very stressful on my whole family. And on top of that, A streak of bad luck seemed to be again after that incident. Only my mom and grandmother went on with me to Dallas children's. My uncle (who had come with me to Texoma medical center) and aunt (who had stayed at the lake to watch the kids) ended up stranded at the lake several days after the incident. My aunt's car, a large Honda minivan which she uses to tote around her three young boys, got stuck halfway up the hill. Turns out it didn't have four-wheel-drive, and the hill was not in good enough condition to get it all the way up. She and my uncle called AAA, her insurance company, the Pottsboro fire department, and tow truck company, and the only one who could wench her car up that stupid hill was a tow truck company who sent a man and his two daughters to their rescue. Then, on Monday, they tried to drive back to Dallas (they all live in Dallas) and many small catastrophes occured. My aunt's oldest son was having trouble breathing in the car,  one of my aunt twins injured his knee several times, and they can barely fit all the stuff in the car. They barely made it home, but they finally made it.

When they got back to where I was, (My grandmother's house), my uncle asked me a question that nearly broke my heart. He asked me "Fiona, do these crazy flashes ever end?" I told him "well for me, there's so many of them that the individual events become insignificant after awhile. And it's not as detailed after a while. It's just the physical motions that stick to me. Like, when I go on a roller coaster, I get flashes from when my wheelchair flipped over at the Adventure Science Center and I broke my left arm." I meant it, but I was sparing him a little. This is what happened many times before, but this time the flash was different. It wasn't so much the motion I remembered. It was the image of me on the ground, watching him shout at the cabin 'Fiona's hurt! Fiona's hurt! Somebody help!' And tears streaming down his face. I always remember what hurts me the most. And that night, I guess that's what hurt most.

Anyway, I'm alright now. I mean, of course it sucks that for the last week of my summer I get to go around in a splint and sling with a broken arm, and it hurts sometimes, but I'm taking medicine when I need it, and I'm still surrounded by people I love. I would ask for your prayers as I heal, and especially as I wait for the stupid swelling in my stupid right hand to go down, so I can type on my stupid Computer during stupid history class during stupid school. Don't get me wrong, I love school, but I feel little cheated. And who wouldn't? But I'm okay. I'll get over it. I'll enjoy the time I have left, and deal with school when I get to school, but it still sucks. Thank you for your happy thoughts, continued prayers, and of course, whenever you can manage it, your donations to my foundation. It's trying times like these that the foundation really helps me the most. It helps my family cover medical bills, it pays for my therapy, and it reminds me that there are lots of great people in the world who care very deeply about me. Thank you again and God bless you and be with you.



  People came from over the United States to participate in the First Annual Fional Rose Murphey Foundation Trail Ride to benefit children with Osteogenesis Imperfecta (brittle bone disease) at the Circle E Guest Ranch in the mountains near Belvidere, TN.   The ride was sponsored by the Tennessee Walking Horse Breeders and Exhibitors Association with co-sponsors, MannaPro, Capitol Area Quarter Horse Association and Equestrian Legacy Radio.   In Addition to Tennessee we had participants from as far away as Montana, Colorado, Pennsylvania, Texas, Indiana, Missouri, Kansas, Kentucky, Mississippi, Georgia, Ohio, South Carolina, Illinois, and Alabama.   Although the weather did not cooperate (one Texan said that "I've seen more rain this weekend than in the last five years in Texas") everyone had a great time in spite of muddy trails and heavy downpours.

  Fiona got to ride a very large, over 16 hand, Tennessee Walking horse around the campground and made friends with the miniature donkeys that Jeni Housley brought.   She had a great time meeting and greeting everyone, working in the office checking people in and generally wheeling around the restaurant area at great speed.

  We had a great selection of vendors, Elaine and Bill Egbert from Camp with Horses, Sherry McClean from SpecTACKular, Jeni Housley with mules and jewelry design, Karen DeLong with Horseplay Tack, Anita Whitworth with Horsehair Pottery and Peter Schuck with Red Brush Trailers.

  The concerts were amazing - on Friday night Ryan Murphey, Fiona's Dad started off the show with songs he had written following the progression of Fiona's journey from the time whe was born to the present day and then Templeton Thompson performed a great collection of horse songs that she wrote accompanied by her husband and co-writer, Sam Gay.

  Saturday night started off with a wine and cheese "Meet and Greet" with Michael Martin Murphey who later gave a great concert to a packed house of his songs old and new finishing off with his most iconic song, "Wildfire".  Gary Roller accompanied him on bass and Shaun Richardson played fiddle and banjo.  Sound equipment was provided by Richard Schmidt of Agape Audio Video.

  On Saturday night before the concert started, Tennessee State Senator, Jim Tracy, read a Proclamation recognizing and commending the members and leadership of the Tennessee Walking Horse Breeders Association and the Fiona Rose Murphey Foundation Charitable Trust for the efforts in organizing the Trail Ride and commending Fiona Rose Murphey for her courage and indomitable spirit and for standing as a beacon of inspiration for so many.

  The weekend also featured a three day trail ride in Washington State at Butler Hill Equestrian Center near Burlington with an extreme trail clinic on Friday given by Mark Bollender and a concert on Saturday night by country singer, Joni Harms.   In Texas at Granger Lake near Taylor there was a one day ride with lunch catered by Rudy's Barbecue and sponsored by Capitol Area Quarter Horse Association.   The weather was perfect both in Texas and Washington State.   Monies raised by the rides will go to benefit children with osteogenesis imperfecta (brittle bone disease) and other related conditions.  We are planning to make this an Annual Event with various locations throughout the country.



Texas Trail Ride Benefit

The Finoa Rose Murphey Foundation would like to invite you to enjoy a day of fun on the trails all while making a difference in people's lives! The Texas chapter of the International Trail Ride Benefit is now open to pre-registation. Come join us for a day of horseback riding, trail exploring and camping under the big Texas sky! 

The trail rides will be held the first weekend in June to coincide with National Trail's Day. This years overall events include trail rides in five states across the United States and Germany. We will be personally hosting a one day ride in Texas on June 7th, at the Willis Creek Campground in Granger Lake, TX.

Campsites are available - Make you reservations at recreation.gov/camping/Willis_Creek

A minimum $25.00 Tax deductable donation is required to register for the ride. (Includes lunch) Pre-register online through this website under the Contact Us page. (Please be sure to specify which location you are registering for.) Check in will begin at 9:00 am and the ride starts at 10:00 am. 

Your charitable donation will go towards helping families affected by OI and other debilitating conditions with things like affording treatments and gaining access to medical devices that can drastically improve a child's quality of life.  

We hope to see you there! - Sincerely, Fiona and all of the Fiona Rose Murphey Foundation 


Fiona Featured in Hume Fogg Academic High School Newspaper


This year Fiona became a Freshman at Hume Fogg Academic High School.  Hume Fogg was the first public high school in Nashville, opening in 1855 and is located downtown in an historic Tudor Revival Building.   In 1982  it was recast as an academic magnet school for Nashville's gifted and talented students.   All classes are taught at the Honors or AP level and 100 percent of graduates go on to 4 year colleges or universities.   Each year the Hume-Fogg senior class is granted over 10 million dollars in cumulative scholarship and grant money from various universities across the United States.   Fiona was featured in the November issue of the school newspaper,  The Knightly News. To read the article Click Here.

She also attends classes this year at Vanderbilt University one day a week in their science program.


Michael Martin Murphey performs benefit concert at Two Old Hippies in Nashville, TN

Fiona Rose Murphey, Nonprofit Organization in Georgetown, TX

On September 20, 2013 Michael Martin Murphey and the Rio Grande Band performed a benefit fundraiser at Two Old Hippies in Nashville .   It was a small venue but standing room only and packed.  We want to thank the band who donated their time and talent, Pat Flynn, Boby Blazier, Ryan Murphey and Gary Roller.   The evening was a great success and the show was the Pick of the Week in Nashville Scene, the wildly popular Nashville newspaper showcasing Arts and Entertainment.   Lance Cowan also arranged a crucial interview for MMM on the Bill Cody show on WSM on the morning of the show.   Lance also spread  the word at the American Music Conference and invited key media people in American Music from all over the world to the event.  Several of them have committed to write articles about the event and the FRMFCT.

TWO OLD HIPPIES is a wildly popular fashionalble Nashville business that features retro-60s and 70s clothing and guitars by Bedell and Breedlove.   They have been noted as one of Nashville's best businesses, and several episodes of the television series, "NASHVILLE" have been filmed there, with actors sporting their clothing.   We want to thank Tom and Molly Bedell (owners), and staff members who were incredibly supportive passing out flyers about the FRMFCT, donating and serving wine, cheese, beer and snacks for all attendees.

But the overwhelmingly popular happening of the night was Fiona's amazing dialogue with the audience, which she held as "Question and Answer/Socratic Dialogue on Life with Brittle Bone Disease".   The audience went wild over Fiona:  she was gracious, grateful, charming and full of humor and positive energy.   She wore a tie-dyed shirt with a "Peace" symbol that was perfect for the Two Old Hippies store, and greeted each person in attendance.

Tom Bedell donated a beautiful acoustic guitar to the cause which was sold by silent auction for $2,000.  THANK YOU, TOM  for this amazing donation to the FRMFCT.   We want to thank the person (who wishes to remain anonymous) for purchasing this beautiful guitar.


Guitar auctions at Michael Martin Murphey concerts raise money for the Foundation

We want to thank some very special people who have recently purchased autographed guitars at Michael's concerts with the proceeds going to the Foundation

LISA HARLESS of Regions Bank in Nashville, Tennessee - thank you Lisa - your help and support is invaluable to the Foundation

DELAINE HESTER of Linden, Tennessee - thank you

MICHAEL and AMBER TAYLOR of Blackwell, Oklahoma -thank you

KIT and GARY HENDRICKS of Parker, Texas - thank you




Update on Fiona's recovery

Fiona Murphey, Congressman, Nonprofit Organization in Georgetown, TX

Well it has been three months since Fiona's back surgery and her recovery has been amazing. She is now back in school, the cast is off (she now just wears a brace) and she has gained three inches in height! She is very excited about next year (her first year in high school) as she has been accepted into Hume-Fogg Academic Magnet School in Nashville. Recently Fiona was surprised at school with a visit from her Congressman. U.S Rep. Jim Cooper (D) who presented her with a certificate as she had written to him regarding a renewable energy bill that she was asking him to support. The local paper The Tennessean wrote an article about her and congressman complete with pictures. It can be accessed at www.tennessean.com/article/20130420/NEWS01/304200062/Nashville-student-s-letter-energy-legislation-garners-results-


Scoliosis Spinal Fusion - My Recovery

I had major surgery on my spine on Tuesday, January the 8th of 2013. My spine was bent to the point where if we didn't deal with it soon, it would begin to affect my organs (lungs, heart, etc.). The surgery, however, brought my curve from an 80* to 90* angle all the way down to a 45* angle. It was incredible. I'll admit, for the first week or so, I felt like complete crap. I was in pain, and a couple of times, my parents even told me that the medicine had made me have hallucinations. I don't remember them, but they said it was something about dwarves???

Anywho, about 9 days later, I was out of the hospital and in a great cast. Now, a few weeks later, I'm feeling great! I've been off of my pain medication for about 4 days and counting! I have had caring family come to visit me, and one of the trustees, my grandma, Diana Hobson, has been here since Tuesday, January 22, helping out and staying with Elle and I so that my parents would get a bit of free time. I'm looking forward to more people that I love coming to see me, because I have to admit, when one isn't allowed to leave one's house for 12 weeks, one gets slightly depressed at times.

I'm also currently on Homebound with MNPS. I have a teacher teaching me History, Language Arts, and Physical Science (for high school credit ;-D); she comes on Tuesdays and Thursdays. I also have a seperate lady that comes to teach me Algebra (also for high school credit) once a week on Fridays. They stay from 12 to 1:30 PM central time. Right now, I'm reading Anne Frank, The Diary of a Young Girl. Man is that a good book! So, all that being said, I'm keeping up with my studies, and enjoying it!

Well, that's all for now. I just want to send a little shout-out to all of you who donated, because you helped to fund my surgery, and therefore made it possible for me to get my back fixed. And, I will reiderate, any amount you can donate to my foundation is GREATLY appreciated. You can donate using the button at the top of this page and the Contact us page, or at the bottom of any other page. Thanks, and I'll write some more later!

See y'all later,

Fiona Rose Murphey



The Fiona Rose Murphey Foundation is excited to announce our second annual trail ride! This years event will be located at the Circle E Guest Ranch in Belvidere, Tennessee. This year the trail ride is to be held in conjunction with the National Championships of the Extreme Cowboy Association. Thursday night will be our Cowboy up ball and live auction. Friday night will be filled with lots of live music from Templeton Thompson, Stephanie Layne, The Sawdust Brothers, Ryan Murphey, Johnny Dowers, and David Lane. Saturday night Michael Martin Murphey will be performing! Then, on Sunday cowboy church will be open to all atendees.

For reservations and more information please visit www.equestrianlegacy.net or call Circle E Guest Ranch at 931-962-1790.

A huge thank you to our supporters at Equestrian Legacy Radio and the NRA Whittington Center!

We all hope to see you there for a fun weekend and a chance to change childrens lives! - Fiona and all of the Fiona Rose Murphey Foundation