Dear Barb, thank you for posting the Celebration of Ray’s life here. I was out of town for a week, therefore unable to attend. I am so happy that I got to watch the celebration in its entirety. What a beautiful tribute, not only to Ray, but to you and Don as well. Everything about it was perfect! I knew ray at CWES and will always remember him. With love, hugs, and thanks, Martha Bernardi
You are an amazing lady
We have lost touch but you and your family are in my thoughts and prayers
Hope to see you soon
Regards and best wishes
Dear Barb, you have been in my thoughts so much with the struggles you have had over the last couple of years losing Don and then Ray. Double whammy indeed and a great shock. Just thank you for being such a shining light in the PID world which includes South Africa. You know that if you want to hop on a plane I live in a beautiful part of the world and would love you to visit. My fondest wishes xxx
Dear Barb, This is to let you know you are in my thoughts. It was a true privilege to help in the care of Ray for so many years, and to get to know and love him and his amazing family. Ray's life outside of the hospital is a remarkable tribute to his spirit and to his indomitable parents. Our PICU team sends their condolences, as does Dr. Cheifetz at Duke. Please know that I am among the legion of friends you can call on if you need my help in any way that I can.
Dave and Inare so saddened with the passing of Ray. Our daughter always admired Rays “can do” spirit and his laughter. Our thoughts and prayers are with you as you move through this time in your life
Dave and Lisa Yonika
Barb I am sooo sorry for your loss, I am so sad, I genuinely will miss him I truly loved him like a brother, I missed not being there with him at the shop. we will definitely be there on the 9th.
I cannot fathom what you are feeling at this point having lost both Don and now Ray. I admire you so much for the drive, determination, and selfless service you gave to Ray and to the SCIDS community. You write beautifully, and I would love to read the book that Ray’s life would inspire. Praying for continued courage and strength for you as you plan Ray’s memorial.
We are so very sorry. I remember Ray from as far back as CWES. Always with a smile on his face, then on the rifle team with Amanda....many nights in that tiny shooting range! You are in our thoughts.
Thinking of you. Praying for strength and comfort. We will miss Ray. He will forever live in our hearts.
Barb, your beautiful writing of Ray's fight really shows who Ray really was for those of us that did not have the opportunity to have met him. You have heard from so many people describe the hero Ray was and the resilient fighter he was. However, he was so much more; a role model, mentor to others and a kid with a big heart, but most of all he was your son!!! My heart hurts for you Barb, but I know that Ray is shielding you now , along with his dad so you can continue your fight here on this planet. Until we can all meet again where kids can be normal without this horrific disease and share happy stories together...perhaps even cooking videos!!! Ray can now enjoy those now. God bless you.
Barb, you and Ray are both our hero’s. What an amazing journey and life you and Don gave Ray. Sending so much love.
So sorry for all you have been through. I sure will miss seeing Ray's smiling face at IDF meetings. You are in my prayers.
Sending love and prayers.
Thank you for everything you have done and will continue to do for all of us, you are a true hero and your words of hope and strength keep so many of us through the most difficult times. I wish you all the best and a time for recovery and rebirth, you deserve it. Best wishes to you and May peace with with you. 💛 Krissie, Pete, Carter and Addison
I am so sorry that you have joined this very sad "club". Ray was a hero, but so are you. I have been there with you through your journey, though you may not remember me. My son passed away at 18 months from SCID - 26 years ago. I feel your anguish. Ray was the "survivor" and I was so glad to watch him grow up. I know that you have been going it alone for the past few years, since Don died. Your new reality is going to be so hard, but if you need someone to talk to... I'm here for you. I'm adding my email so you can feel free to message me personally. <3 <3 <3
I cannot even fathom going through. I do know without a doubt your life was enriched with Don and Ray in it. In fact all of our lives are better because of your family. You all have done so much for the PI community in general, but for the SCID community in particular, you have been quite literally a God send.
Ray was sunshine Ray. He lit up a room with his smile and his infectious laugh. He touched more lives in his 25 year than most people touch in 80. He had your warrior spirit. He fought hard to be normal because you fought hard for him. The contributions you guys have made will go on for generations. I know you still have so much to do to get through the next little while, but, when you can sit down and take a deep breath, please know that there are many of us out here ready to support you in whatever way we can. You are so loved.
My sincerest condolences on the terrible loss of Don. I cannot imagine the pain of losing a husband and father. My thoughts and prayers are with you both during this difficult time.
Dear Barb and Ray, I am so very sorry to hear about your loss of Don. You continue to be in my thoughts and prayers. Love, Kathy
Dear Barb, words can’t express our sorrow for you and Ray. Now, all thoughts and prayers are on a recovery for Ray, and strength for you. With love, Marcia and John
Barb,Don and Ray
My thoughts and prayers are with you all. I can't imagine what you've all been dealing with and will continue praying for you all.
Ray. Barb. Don. My prayers to all of you. You have been the strength of so many. I wish you could rest and let others be your strength. But I know that's asking the impossible. I do know our Almighty Father is watching very carefully and He hears your every word and He will be your strength.
Cindy has told me all you have been going through -- and I have just read your posts on this site. George and I are so sorry that all of this is happening -- and HAS BEEN happening to all of you for so long. You have always been a spunky and dermined little warrior and I hope that attitude is serving you well now. I am keeping all three of you in my heart and prayers.
Sending prayers to you and Ray, that he'll be able to do Gene therapy in a few months.
Barb- I am so sorry, for ALL of you, that all these delays are taking place. My heart goes out to you. You're an amazing lady. Even though you are going through everything that you are, you still help everyone else. You are emotionally & physically drained. How could you not be? I wish I had the answers but I'm praying to the One that does. I pray that there are answers & direction. I pray that Ray does not become discouraged. I pray that you get some rest. You and your family are loved very much and I, like everyone else that knows & loves you, would do anything to help. ❤
Reading both the pain and the anguish between the lines and in the lines and over the top of the lines......my heart aches along with you. For a moment I was transported to when I first met you in that dour PICU waiting room. Ray had no less than 13 chest tubes I believe and the diagnosis was not good. And you and Don were both down. But you were not out by any means. You're tenacious, Barb. Tenacious like I've never known anyone to be. And this latest delay is another low punch, but it's no final punch because any one, any dr, any vector that underestimates you or Don or by golly stubborn headed Ray, well, they will rue the day I'm certain. So yes, no sunshine, no silver lining, just the dour and the sour.....right now.....but it's certainly not over. And you've got a crowd, a stadium full of people cheering for you, storming heaven with prayer, and remembering that when everyone else would have given up, you, girl, do not. So we won't either. Love you tons!
We have known each other for many years. As you well know I am a talker!!! For once I can actually say I am at a loss for what to say. I am devastated reading this post and just keep thinking this just stinks. It is so unfair and you guys don't deserve this. I wish I had a magic wand but I do have lots of prayers which I say every night for you. Know you are in my thoughts, my heart and my prayers. Much love Barb
I honestly don't know what to say. I'm sorry. I wish I could fix this for you guys. This stinks (to be polite). It's not fair. I could go on and on....but nothing helps. You are so helpful and supportive to everyone else...just want to help you. 💔
Dang dang dang! Can't even imagine how overwhelming all this must be. Know the Fisher clan is thinking of you and saying prayers--and sending Hokie power your way.
So sorry to hear of the latest news. In our prayers. With a friend birding so we will be especially prayerful!
Timing is everything. Praying for you guys. Praying Ray continues doing well with the nutrition and less anxiety. Praying for patience and peace for you and Don. This will be such a sweet victory when it is all over and you have won! 🏆
Unbelievable!!! I can't begin to imagine having to deal with so many obstacles at once. Barb, Don & Ray, I am so sorry. I know there are no words I could say that would help but know I'm praying overtime for God's Devine intervention. Love you all!
Barb -- No trite, hang in there, you can do this, you got this, here. Of course I believe you can do this, you got this, etc. But right now, that is not even the point.
Right now, I give you permission to be, just for a second, just for a breath, just for a minute, the one who receives. The one who takes in. The one who accepts. Right now, just for a minute, I am asking that the whole of heaven and the whole of earth that is good and kind and loving have mercy, and turn that mercy, that goodness, that kindness, that loving, squarely and intently in the direction of you and Ray and Don. That the wave you naturally fear would morph into this swell of uplifting wellness, and that you could, for once, and then again, and then again, and then again, ride atop that swell into a climate of greater health and strength and just ordinary good times, too long denied all of you. That is my vision and my prayer and my hope and my plea and my cry. Take a breath, not to be strong, which you already are in spades, but to receive. I love you.
Oh, Barb, I am so sorry. I completely understand the control freak aspect and even if you were not a control freak, the riding of the waves is NEVER easy. The anxiety can get overwhelming. I cannot even imagine the anxiety for Ray. ((((HUGS))))
Excuse the language but Jesus, Mary and Joseph...this is not what you need right now. I am soooo very sorry about the delay. I have been thinking about you guys and watching the calendar. I can't even imagine your nerves or Ray's. The waiting is torture. I know they have their reasons and I will pray hard that they get the answers they need and things will move forward. Sending the biggest, tightest hugs and much love. 💙💙💙💙🙏🏻🙏🏻🙏🏻🙏🏻
Big hugs for all of you. So sorry to hear about the delay. Ray, you are one tough cookie. We are keeping the faith for you. No waves will wash over you today, tomorrow or ever, Barb. Somehow we have to hold you up. Don, we send healing vibes 24/7. Much love, Millers
Hi, Ray! I have been reading your blog and catching up with you. Big things are coming up in June, and I want you to know that I'm thinking of you and will be happy to visit with you while you are in the hospital. My cell number is 325-262-1923. If you are still on Facebook (which you probably aren't since I understand that young people have more exciting ways of staying in touch now) message me. Everyone here is fine. Becca has her birthday on Tuesday, so Glen and I will babysit so she can go out with her husband, Mark. She recently cut back her hours at Meals for the Elderly so she could spend more time with her children. Jessica is traveling a lot for her job with Principal LED, and she will be in Florida next week, and will stay a couple days with Oma. Tori is busy with family, hairstyling, and selling cosmetics (LipSense). Her husband is now a professional cowboy and spends most days in the saddle herding cattle. On the weekends, he rides his Harley with his Cossack buddies (I worry about that). I hope you are in good spirits and looking forward with hope to the gene therapy. Take care, nephew.
Please know I am thinking of the three of you.
Good to hear the aspirate went well and you were able to go home. The back and forth will be rough. You are a great mom, Barb. Happy Mother's Day!❤️
So glad to hear everything went smoothly today. There's a lot to be said about sleeping in your own bed. Hope you sleep soundly tonight. I don't care how old our kids get having to leave them in a hospital is hard. Will continue to hold you all in my prayers. Much love 💙💙💙
I know what you mean about letting go. I really worry about it when Baden is older. I know that day is coming. Hang in there. I hope everything goes well.
Of course it is hard! You never stop being Mama Bear no matter HOW old they get! Glad you are home and can rest up now. So thrilled Ray has reached this point. We live you
Glad you are home and all went well. 3, 23 or 53... it's hard.
Glad to hear. Sorry to hear Italian is off the menu. Meat is good.
Happy to hear you all are home! Glad everything went well for Ray. Keeping you in our thoughts and prayers.
So glad to hear the good news and know what it means to be able to sleep in your own beds. God bless on catching up on sleep and God bless on relaxing your hold and letting the nurses support him when you can't be there! You've been one fierce warrior!
Praying for all three of you.
Praying for you this morning, that all goes smoothly. We love you!
I was thinking about you guys and wondering if you were there. I will be thinking about you both today and sending prayers that all goes smoothly. Hopefully, you both get to sleep in your own beds tonight. Sending much love and many prayers, Linda
Hope all goes well and you get out of there on time! Thinking of you.
Thinking of you, Ray! Hope your procedure goes well tomorrow!
hi, ray! thinking of you and your family! you guys are just amazing, the most resilient people i know! prayers your way
Praying for all of you! Barb- Happy Mothers Day to a fabulous, dedicated & loving Mom. You are a blessing to Ray. Thank you for keeping us all in the loop. This SCID family is an amazing group of people, and though this disease sucks, the love and support that has emerged is a blessing to us all...and that is largely due to YOU!! 💕
Michael would do the exact same thing...knock him out and wake him up when it is done. Good luck with everything next week. Please let us k now if there is anything we can do for you and your parents. Love, The Knott's
Ray, I have to say I don't blame you. I wouldn't want to be awake either. Hoping all goes smoothly and the results are all positive. I will keep you all in my prayers, sending big hugs and love to all of you.
Just wanted to say "Hi" and let you know that Jim and I have been thinking of you! We have Deuce here with us. I know he misses you. How can I get pictures to you? Hang in there and I'll be back soon!
Praying and praying for Ray and all of you guys. Stay strong. Easier said than done, I realize.
Waiting can be so frustrating but June will be here in no time. I really hope that everything goes well. I'll be thinking of you. Hang in there.
We nearly have liftoff, hoping and praying all goes well xxx
Hugs and best wishes to you all!
Lifting each one of you in prayers! Ray, you are remarkable! Your parents are pretty cool, too! Hugs to you all!!
Praying that all goes well with the preparations and the gene therapy!
Gosh, Barb...you must be so exhausted. June is right around the corner. I am so excited to see this BLUE RIBBON FLOWER working in Ray and making all of your lives better!🌟🌟🌟🌟🌟🔖🔖🔖🔖🔖 (imagine this blue) lol! Prayers!!
Hi Don, Barb and Ray,
WOW , just read the latest entry. My stomach actually did a flip when I read that this could all take place in a month. Holy moly, I can't even imagine your nerves Barb. Will pray extra hard that this can finally get underway and Ray can begin to live a more healthy life. Sending tons of hugs, much love and an abundance of prayers for all involved.
Glad to hear the good news! On our prayer list!
Glad it's looking like they can get started. Sending love and prayers for all three of you. ❤️
Praying for good things!! It's a journey most can't endure but you are all doing so well taking it all in stride and and simply having the faith it will all work out well. You're all forging a path for those that follow, and we're all praying for Ray and your family! Best of luck!!!
What a trip! Prayers continuing... we also do the nighttime monitor, (((hugs))) the need for sleep is real! 💕
Hi Barb, Don & Ray,
GREAT NEWS! You know we are all pulling for you and love you all very much. Your angels are working very hard for you when you get an amazing result plus they had time for a rainbow too.
Steve, Irene & Michael
Yes ma'am, someone was definitely in your corner today. No way, no how would I have ever thought that they were going to save that port. Thankfully, you will all get to sleep at home tonight. Sending hugs,love and prayers!!!!!!!👏🏻👏🏻👏🏻👍🏻👍🏻👍🏻💚💚💚💚
Ok, so my stomach just hit the floor. Ray, I swear you are slowly trying to kill me. 😜😜😟😟!!! Needless to say there will be tons of prayers being sent your way. Along with lots of love and hugs, Linda PS, please keep us updated!!!
Well darned that old port anyway! Frustrating when those things blow... Keeping you in our prayers... ((((hugs)))) too! Heidi and the gang from Idaho
Ray is a super hero, thoughts and prayers to you guys !
Hi Barb, Don and Ray,
Thanks so much for the update. I hope you hear more specific dates and times soon. It's like living in limbo right now. Ray, I am hoping you are keeping healthy. Please know I am keeping all of you in my prayers.
Sending love, hugs and prayers ❤️❤️❤️
I'm only now catching up on what you've been going through the past few weeks. I'm glad you're home and hope you're feeling well. Merry Christmas!!
So happy to hear your back home and have this part behind you 😉
Hello! Glad to see you are home. Hang in there.
HOME....such a nice place to be😍!!!!! Get some rest everyone 😍😍😍😍!!! Much love and sending prayers
Of course I knew the last post was too good to be true😜😜😜!!!!! Ray, Ray, Ray....you gotta quit throwing those curve balls. Barb, I swear we need to nominate you for an award. With all you have been through 😍😍, I swear they would have locked me up long ago!!! Sending love, prayers and hugs. I should be sending truck loads of wine😂😂😂😂
Yes..!!!!! So very glad that things went smoothly and they have the cells they need. It sure was a long day😨!!!! So very happy that part is done. Ray, you are the man❤️💚❤️💚. Continuing to say many prayers and I am sending you guys huge hugs and much love.
"After apheresis"... sorry about all the complications and extended time. So thankful for the staff and Ray's endurance! All in all, very good news! Yay!! Hope you all get some rest tonight.🙂
In my prayers! Love you all.
Oh Ray...WHAT are we going to do with you😜😜😜!!! I told you not to throw us any curve balls...4 doctors 3 nurses and your poor mother. You're going to kill me Ray😜😜😜. Seriously, sure hope things are going ok and they get what they need. Sending love, hugs and prayers that all will go smoothly.
Delay: always a reason...look for the blessing!💕💕
Dislike the Delay! Let's get this show on the road.
Just thinking about you and hoping you have a great day!
Good luck on Wednesday. Praying for a good vein stick.
Greetings from India...how exciting that you will be having gene therapy - the "cure" and not just a "treatment". Thanks for keeping us posted and May the Lord shower his choices blessings on you and make this journey fruitful. Love, hugs, prayers and positivity Aditi
Good Luck, Ray! You got this! Best Wishes for a smooth apheresis and successful GT.
Hi Barb, Don and Ray,
Just read the latest update. Barb, that line placement doesn't sound to easy. Will they put Ray to sleep to do it? Sending hugs, love and above all lots of prayers that everything goes like clockwork. NO CURVE BALLS Ray !!!!!!!
Hi, Ray! This is Maria Valença from Brasil. I have two SCID kids that are also Dr. Buckley's patients. I am praying for you that everything goes well. God bless . Maria and family.
All the best Ray ! As the greatest Ferrari drive in northern, VA you got this easy !!!
Get well soon,
Thinking of you Ray as you start this new leg of your journey. Barb and Don, thinking of you two with love and comfort. Love and hugs Ballard family 💚❤️💚
Hi Ray, we'll be thinking about you throughout this and look forward to seeing you when you are home.
Rooting for you Ray! Warmest wishes from South Africa xxx
Ray - You have some fans on the left coast who are rooting for you, BIG TIME!!! Bring on the T's, B's & NK's!
Hey ray its chris and i'll be praying for you man love ya and god bless you
That is a beautiful Christmas display!! Thinking of all 3 of you. One day at a time!
Ok Ray, buckle up bud the ride is about to begin. Know that I will be with you all the way so PLEASE don't any curves at us. I don't do well on curvy rides. Will send prayers and hugs to you, Mom and Dad!!! You got this Ray❤️❤️❤️!!! The beginning to a new healthy life...🙏🏻🙏🏻🙏🏻🙏🏻👍🏻👍🏻👍🏻👍🏻👍🏻Love ya all, Linda
Good morning Ray,
We are here always cheering for you and praying for you guys.
Sending you a great big hug,
Hey Ray, we will be keeping you in our prayers out here in Idaho....
👍Ray, praying for good results. Will be checking in. Frances
Ray, already praying for you, buddy. You could say I've been a lifelong fan of yours! No reason to quit now! I'll be checking in regularly for the updates and keeping you in my prayers. Sending love to you all!
Hi, Ray! So you are just a few days away from beginning the rest of your "new" life! Exciting. We will be praying for you and cheering you on. God bless!
Just want you guys to know I will be thinking of you and sending many prayers that things go smoothly and the results are positive!!!!!! You got this Ray !!!❤️❤️❤️
The Byrds are thinking of you and keeping you in our prayers. ❤️