Good news on the FES Therapy Cycle. It is scheduled for delivery and set-up on Friday. This Friday! It’s exactly one week, to the day, since we advanced the funds to Restorative Therapies to get the delivery in motion. We were told it would take four, so I thought I’d have more time to pull the funds together (i.e., keep begging for donations).
So, as you might guess, I’m in a bit of a panic to make this work. The plan is to float this debt on a credit card for a month. Actually, this charge already went through. So, technically it is paid-in-full as far as Restorative Therapies is concerned. Whatever cannot be raised from my pitiful (but necessary) begging will be paid from our household finances first and then Ryan’s Special Needs Trust Fund as a last resort.
Just so you know, we always tap out personal funds first. Really, every extra penny Sue makes is applied to the care and treatment of Ryan. We buy nothing that is non-essential for ourselves (in almost two-and-a-half years). No luxury for us! Our daughter, Kari, also feels it (and has never… not once… said a word about it). This is so unfair.
Believe me when I tell you it’s both humbling and embarrassing to ask for help. It hurts my pride. If only those thugs would take accountability. I suppose they care about me even less than they care about Ryan, so I don’t see this happening until I drag them through the courts. Even then I doubt I’ll see a penny, but having a lien on their lives might be fair trade.
Sorry about that soap box tirade. It’s just too easy to get me riled when it comes to these cowardly punks. They are nothing more than a drag on society. Oh, and I include their family as well. The whole lot of them just suck… big time.
Where was I? Oh, yes…
We did get some much-needed help yesterday with a donation from the Briar Wood (and Broad Run) High School Lacrosse. These local Ashburn schools always treat Ryan so well. We now have right around $4,000 dedicated to the purchase, or roughly 23%. We already paid down the balance by this amount.
My apologies for my writing being so scattered today. My mind is reeling with so many balls (ha, ha, I said “balls”) in the air.
Gail Doyle says
John, Such a great thing to do for Ryan…that’s a long bike ride ,but you guys did so good last year and know you will do even better now. Will get donations in very soon and what a good friend Ken and Sue have in you Good Luck!
John Maletta says
Hi Ken. I commit to you and Sue that I will get the marketing started for the second annual Ride For Ride this week so that we can start generating the money now for Ryan’s new Therapy Cycle. I will share it with you on Facebook and I’m asking for all of your friends and neighbors in Ashburn and throughout the country to help Ryan by sponsoring our bike trip fundraiser for Ryan. We raised over $7,000 last year and with everybody’s help, let try to beat that amount for Ryan this year! We’ll be riding 480 miles in just 6 days through New York state and southern Ontario. To “Diviney Nation” — with your generous help, We Got This!!!
I’m a little confused as to why you don’t use the trust fund money for this purchase. Is it earmarked for something else? It seems from your post, and please correct me if I’m wrong, that all the money that people have already donated is just sitting in a bank somewhere. Hoping you have had a peaceful day.
I’m happy to set it straight for you. Who knows, maybe someone else, like a new reader, was wondering the same thing. I should always remind myself that not all people are abreast of all aspects of brain injury, or even Ryan. Traumatic brain injury is expensive when it happens and for the rest of one’s life. I would be hard-pressed to find any illness or injury that is more so. In fact, I’ll just state there isn’t any. It touches every part of the body for a lifetime. Most therapies and treatments, including some expensive drugs and durable/therapeutic equipment, are not covered by insurance and Medicare because everything is “experimental” when it comes to brain injury.
Oh, how I wish the Trust Fund just had money sitting in the bank somewhere. It would be nice if we could get to that point where we could start saving for future care and treatment. I want this as the ultimate goal (although not very likely, save a unforeseen sizable donation). But, we must use this and our personal funds all the time (We always exhaust our personal money before tapping into the fund, but in the end they both are entirely expended). Long time readers will know we used it to help pay his medical team, like IBRF last year ($100,000) and again this year (another $100,000), purchase the HBOT ($20,000), purchase the Infrared Therapy Helmet ($6,000), and… well, it never ends. Notice, I said “help pay”. We are grateful for all the help we can get for Ryan. It has given him a chance. It has provided him comfort.
So, I guess you are correct on two assumptions and completely wrong on the third: We are using the money from Ryan’s Special Need Trust Fund and what we have was earmarked to help pay for other things (but it is no longer), but it is not “sitting in a bank somewhere”.
On a final note, it’s humbling and embarrassing enough (as I stated in my post) to be so needy. Although I hope you didn’t mean for you comment to come across somewhat suspicious as I first thought (but decided to give the benefit of the doubt), it bothers me that someone might actually think this way, even when some quick math would prove otherwise. It never even crossed my mind!
Your question is a perfect example of why I like the ability for anyone, without restriction or condition, to leave a comment on this website. There are questions, concerns, and suggestions that I would never anticipate.
Spoken with true class and grace, Ken. I doubt anyone could know the full financial, physical and emotional impact of an injury of this magnitude.
Most of us go about our daily lives, not really thinking about what it would be like to have each and every day consumed by providing full time care for a son. We don’t contemplate every cent of our money going into medicine, medical equipment and therapy — or not being able to buy anything personal for ourselves or someone we love. We don’t pause to remember the physical endurance, mental strength and total commitment necessary to lift, move and work with a tall young man who cannot (yet) move himself — to bathe, feed, medicate, and stretch him, all day, every day, leaving little to no time to take care of yourself.
I’d say the vast majority of souls can tune out, forget or refuse to allow themselves to think about the depth and breadth of anguish and agony your family has suffered through. If a person had the ability, and the will, to imagine themselves in your shoes, he/she could count the endless ways this horrific injury has affected your lives. But who does that? A few people do — but some just can’t, or won’t. I think it’s just human nature to be self focused, and play mind games like, “oh they’re just fine, after all, look at all those donations! Never mind you have spent every penny you have helping your son survive.
I think we may have a couple folks who appear under various pseudonyms to poke at you, Ken. I could never have responded in the even handed and articulate way you did. I am sure you know there are people who do understand how much you have endured, the nightmares you have lived through, the losses you have known and the grief that has wracked your heart. We also know how your unyielding sacrifice and dedication to Ryan has given him the best possible chance at overcoming the devastation wrought upon him. I feel that those who lack the capacity, or the willingness, to demonstrate empathy or genuine caring for your family have absolutely no business being here.
Carla Liberty says
To this day I cannot fathom why anyone involved in this beating (that includes families) isn’t trying to make it right by Ryan and your family. Even if these people were penniless (which I seriously doubt), they could chair fundraisers that have low overhead such as car washes, bake sales, 50/50 raffles, etc. I happen to know some folks who stood out the cold rain in front of local grocery store for a few hours (with nothing but a sign and a few baked goods) who raised well over $1000 for Ryan. All it takes is a little can-do attitude and willing participants.
Consider this a challenge: Organize a 50/50 raffle at one of your local club meetings or church functions. Write a letter to your church requesting a special donation (or extra collection request) in order to help the Diviney family. Ask your kids’ teams to play a game in honor of Ryan and collect some donations during the game (or do a 50/50). Maybe ask the concession stands at local little league or high school games to promote a “round up to the next dollar” campaign by contributing the “round up” amounts to Ryan. There are SO MANY things people can do.
Who’s up for the challenge????
Please give our boy a hug from the Liberty family!
Time for Team Diviney to get creative about fundraising so that we can help ease the burden on the Diviney family. It is not fair at all that their lives were so severely affected by the unbridled rage of some uncivilized young men.
Please take some time to consider what you and your friends might be able to do to help this family. Ryan is still fighting!! And as you can see, his family is always there to make it possible for him to do so.
The costs are beyond what you and I can imagine. The Divineys have given up vacations, new clothes, cars, everything, anything in order to help keep Ryan healthy. What could some of us give up in order to help another deserving family live a better quality of life?
Thanks to one and all. Prayers for an abundance of love and an outpouring of caring and support for Ryan, his Mom, Dad and sister. May what you give be returned to you a hundred fold!!
Love, hugs, and gratitude for knowing this devoted family!
If we win the Lottery (Wow! Let’s think on this for a moment! LOL), the biiig one, you can believe Ryan will be included in how we spend it. I think the money will be coming in. I liked Vicki’s suggestion that everyone send just $1.00.Of course, more if you can.
Praying the Therapy Cycle and supplements will make a difference over time in Ryan’s bone density.
Always here with kind thoughts, much hope and faith, and love.
What exciting news! And how great that you can laugh at yourself in almost the same breath that you rail against those who have injured Ryan and your whole family so deeply. That’s true humility, not the fact that you ask for the assistance Ryan needs so desperately. Gail is right: people help your family because they want to, out of love and compassion. We will always be here for you and pray that God will continue to heal Ryan and provide for your family through whatever means He chooses. We can’t wait to see Ryan using the FES Therapy Cycle, and the results of his new workout regimen. You got this, Divineys!
Gail Doyle says
Dear Ken, That’s great about equipment coming so soon. Yes, I’m sure if those lowlife and their families paid what was ordered by court ,it would help a lot. Hoping and praying this machine will help Ryan even more.On my way to church, will
pray for you all. Have a calm day (if possible ) Hugs to Ryan love Gail
And please don’t ever feel you are “begging” All is given with much love and because we want to help our boy.