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Tom’s life changed dramatically when he was diagnosed with CIDP – Chronic Inflammatory Demyelinating Polyneuropathy – a rare and very painful autoimmune disease that affects the upper and lower extremities. His condition has continued to deteriorate, and he has difficulty with things we take for granted like buttoning, tying, grasping and lifting. He fatigues easily, can no longer feel the bottoms of his feet and lives with near-constant debilitating pain. To help alleviate some symptoms and slow progression, he receives IVIG (plasma) treatments at our local VA Hospital every three weeks. Due to his illness, Tom is no longer able to hold down a job and is now considered 100% disabled. The great news is that there is a treatment called HSCT – Hematopoietic Stem Cell Transplantation – that can help, and Tom is scheduled to receive this treatment in Russia in January 2016. Thanks to Dr. Denis Fedorenko and others like him, HSCT can halt the progression of CIDP. Others who have gone to Russia for this treatment have experienced a halting of their deterioration and even the reversal of some symptoms. Tom is very excited about this very real chance to regain his health but needs your help to cover the costs involved for the necessary medical treatment and travel, which are not covered by any insurance.
You may know Tom from his prior Army service or from his work at Digitec. Or you might know him from his attendance at Sacred Heart Church or from his neighborhood where he chairs a committee for the Homeowners Association. Perhaps you’ve met Tom through his wife, Mary, or his daughters, Ann Marie or Kasi. And then there is his beautiful, precious granddaughter Mila, the light of his life. Mary is Tom’s caregiver, and together they are raising two year old Mila.
During active duty service in the Army, Tom served in Desert Storm. Now, after years of service to his country and community, Tom needs your help. He and Mary currently live off his disability income. Travel to Russia for treatment he cannot receive stateside, HSCT, and continued care are costly and we anticipate overall costs will exceed $50,000.
To help with the financial burden of Tom’s uninsured expenses, a fundraising campaign in his honor has been established with HelpHOPELive, a trusted nonprofit organization that has been providing community-based fundraising guidance to patients and their families for more than 30 years. All donations are tax-deductible, are held by HelpHOPELive in the South-Central Stem Cell Transplant Fund, and are administered by HelpHOPELive for transplant-related expenses only. Please consider a contribution.
Working together, we can make Tom’s prospects for the future much brighter. Thank you for your support.
With sincere gratitude,
Annette Cayard (Tom’s sister)
acayard@outlook.com
we leave in 5 days!!
Merry Christmas to everyone. We have been SO blessed.
omg, we have a mere 35 more days until we fly out of Houston for Moscow! Wow!!! Exciting indeed. We have our VISA's, passports.....it's getting real
things are moving along for our January trip to Moscow for treatment. We have ordered our VISA's and that was a little over 1,500 for 3 of us as my sister Martha will be traveling with us. Someone graciously donated their airline miles for our flights! wow, what a blessing!!! I cannot thank her enough. Our goal is to take care of this and spend some time paying it forward! So many people have given of their time and assets to help us help Tom....
We have the hotel booked. So things are looking up! Yeah
We are out and about to take Mila to look for a pumpkin for Halloween. She is so silly. After a rough morning I am happy to say Tom is feeling good and we are able to enjoy this lovely fall weather. ❤️
Hello! We had our Car Wash/Silent Auction yesterday and it went really well. Our friend, HSCT Warrior and organizer, Cheryl McCandless did such a phenomenal job!!! There were many volunteers known and unknown and soon fast friends in a kinship to help Tom on his journey to HSCT and a healthier quality of life.
Gods blessing on all involved wether there or through prayer and spirit. We are truly blessed and humbled
Today is just a reminder of how badly Tom needs HSCT. He has been up since the wee hours of the morning in pain due to his back... He has taken the allotted amount of pain meds and so has given in and taken a muscle relaxer. The upside is it will take away some of the pain, the downside is he will likely sleep the rest of today and the better part of tomorrow.
hello all
It has been nothing short of an emotional struggle the last 3 weeks. Our world has been turned upside down.
God has blessed us in so many ways and I am unsure of where he is leading us. Everything is still a go for Russia and we have our Hotel reserved, working on Airline tickets, and building up Tom's funds. We did a Avon Fundraiser and we are working on one for Mary Kay with a very special friend.... A new tshirt is in the works and that shall be out in the next week or so, yeah!
We went to see the War Room and what a great movie that was. Learning to turn everything over to God is hard for one who can be a control freak but it is essential. All things are possible through God.
Have a blessed weekend and spread the word about HSCT. Save a life. And for those who cannot have HSCT pray for relief of pain. This kind of pain is horrible and defeating.
Thanks....hugs and prayers,
Mary
There has been a lot of change and sadness in our lives as of lately. A dear friend of ours who had cidp has passed away and the other is just far to personal to post but we are in great need of prayers to make it through this most difficult time.
Thank you,
Tom and Mary
Hello everyone! What a blistering heat we have had for the last 2 weeks, we were relieved to see the rain come out as everything around us is turning brown.
We received our passports in the mail, we have booked the hotel in Russia and a friend is looking into the flights for us... Life is good sometimes...
Mila is growing up so fast, learning new words like wild fire and is becoming more and more able to hold a conversation and follow directions. It is so cute, the Pantry has been one of her favorite rooms in the house as she likes to play in there rearrainging the cans and boxes... she is a little ocd but lately she has gone in there and gone "shopping" for us bringing out a Kroger's shopping bag with packaged fruit and small boxes of light food and brings it to one of us... LOL she is the best.
Thank you for your love, prayers and generosity,
Mary
every Wednesday we have Adoration for 2 hrs. Today is an unusual one as I step inside the Church by myself. Tom is just so tired that although the alarm woke him he feel straight back to sleep. He slept most of yesterday as well, so I can see that his body is winding down as we get closer to his ivig treatment next week.
His new thing is swollen feet and they hurt. I am not sure if it is CIDP related or maybe a medicine reaction. He hobbled along but has kept pretty positive.
Thanks for all the prayers and good wishes.
OK so we have hit a new phase in Tom's do's and don'ts list or it has been added to my honey to list...lol mowing the lawn. sounds easy enough but it kicks his butt now; not only for the rest of the day he mowed lawn but the next day too..
Fox News just left the house. What a wonderful, blessed surprise. Tom did great and Ms. Ashley Johnson is a gem...
Let's get the word out about CIDP and HSCT. Let's get Tom to Russia!!
hello ☺
we are on our way to meet up with some friends for some.more fundraising planning...after Tom's pain management doctors appointment.
God's blessings ❤
we still have a ways to go please share Tom's page and let's do this!
#stopcidp #disabledvet
Well it has been almost a week since I posted and I apologize for the delay. We had a grand time at Mooyah's. We were able to meet up with family and friends...what great support. There was support from many others who came out throught the day and all I can say was the blessing was the surprise interview done by Ashely Johnson at Fox 26 News... She was so sweet and patient with us. Tom did really well and I am so proud of him. However I do not have a link to share at this moment.... We have reached out to see if we can get one as that would be super to share.
Anyhow, we have a long ways to go. Please continue to share our story with everyone you know. I promise it will not be in vain. God's blessings,
Mary
yeah!! The day is here. The day of Mooyah.... Come one and all let's celebrate the miracle of Tom.... And the miracle of hope for a better life.
All day 11-9.
Hello everyone!!! What a day this is. 29 years ago Tom and I married in San Angelo, TX. It is hard to believe it has been that many years but I wouldn't trade it for anything. They did say better or worse and God knows Tom has put up with some of my worst days... lol I love you Tom!! I will always love you.
I will find a way to get you to Russia... I promise!
Hello Everyone:
We are getting closer to our date with the wonderful folks at Mooyah's. Please save the date: June 21... ALL DAY!!!
Print up a flyer and have a great burger or shake or both...YUM
Hugs
for every piece of jewelry sold Bravelets sends Tom's campaign $10.00. That is awesome.... From now til the 25th of May receive 10% off your purchase using "BRAVEHEROS" in the coupon section.
the fight goes on. I have signed up a request for a fundraiser day/night with Mooyah's and believe me when I say their burger are good.
It was a pleasant surprise to see the barometer moved to a higher level this morning.... :)
It is also nice and calming to see these sweet messages left from family and friends.
As we continue through this journey I would like to say thank you all for your love and support.
Hello everyone!!
Just a little update. Russia really cannot come soon enough. Tom is having more difficulty walking. I am glad that we have so much support. Now we need this support put out to one and all.... share, share, share. Let's get Tom to Russia.
Russia is our Goal.... Stopping CIDP is our Mission!!!
With God's help we will get there.
Love,
Mary
Just an update. sorry I have been out of it. Seems the whole household was sick for the last two weeks. Tom was put on a z-pack and had to delay his ivig treatment for a few days in order to be healthy enough to have it done.
He is currently at the VA Medical Facility in Houston, Tx getting this done and I am sure it will be of a relief to him as his legs havebeen hurting him and not allowing him a good nights sleep.
Blessings to everyone... :) Mary
Tom, I am praying for you. Ihave had cidp since 2008 and know how painful it is. Continue to stay strong and fight hard as you have been
valerie
Tom, I'm praying for you and your family. I'm praying that the money starts rolling in. Asking the Lord for provision to come in from the North, South, East and West!! Don't get discouraged, it WILL come in. (Make sure and name which direction you see it coming in!)
Linda Rhoades
Tom & Family,
We are praying for you. I am on Teas Lake Board and wanted to let you know that we are praying for you. Keep fighting. God has plans for you..
Bo & Art Arguello
Hello Uncle Tom,
Maggie and I are thinking about you and praying for you and Aunt Mary during this time. We look forward to seeing both of you in the near future and we love you guys! :)
Drew and Maggie
I'm in on this, Tom and Mary.... We need to get this approved more in the U.S. asap. Mary, you may need to stay home...I'll go to Russia with Tom. Lol. (Kidding, but I might to a cool cap from there). I'll do more soon. Hugs and Love to you both.
Betty and Jo Long
We're here to support and be with you on your journey! Praying for you... All will be well. :) We love you!
Joe and Joysa
Tom, I am so blessed to be your sister. You have given so much of yourself to help others and now it is time for us to help you. Praying that you will be able to regain your health through this journey of hope. Love you so much! :)
Annette
Thomas, I am so happy to get this up and going. We will see Russia! I love you with all my heart and soul.
Mary
Make checks payable to:
Help Hope Live
Note in memo:
In honor of Tom Sedita
Mail to:
Help Hope Live
2 Radnor Corporate Center
Suite 100
100 Matsonford Road
Radnor, PA 19087
Donor preference is important to us. Please specify in writing if you wish for your name or donation amount to be kept private.
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