Alicia Johansen (formerly Moore


2/20/09
Dear Tracy

I have been wanting to call you and then I stop and think how many families you are helping and how hectic your life is and I dont want to tie you up with me on the phone, you have such a gift for what you are doing, I tell everyone about what you do and how you were there for me and Stephen's dad. Praise God for you and your heart!

I don’t have to tell you how I have been feeling these last few weeks, slowly Stephen is coming back to us, you should hear him on the phone, he is so sweet and tells me how much he loves me and misses me, I cry and cry after we talk from so much joy! I just called when I got in from work and they said to call back because he is EATING in the dining room....

Thank you so much for keeping up with how he is progressing and all you do for the families going through this heartbreaking journey.

Claire Castleman


1/29/09
Dear Mrs Porter,

After all you have been through, and still have to go I admire your ability to reach out and comfort others. I pray God blesses you daily. If I ever see the chance to influence any donors, I certainly will.

I would like to tell you that the bags are wonderful and bless you for your heart (and effort) to reach out to others in a tangible way. My son was not expected to live for the first couple of weeks and so we too, stayed around the clock. The morning "showers" in the IUC bathroom would not have been possible without the necessities you include like soap and toothbrushes.

As we were enveloped by the waves of emotion, sometimes when our heads bobbed up to the surface where there was air, we would realize we did not have the energy to move. Then we would remember that there were snacks in the bag. That sustained us for a few more hours. I remember looking through the written information and almost drinking it in, trying to learn as much as possible. Much of it was beyond our needs or understanding at the time. It was hard to imagine then, why we needed to know about rehabilitation or support groups. We did however order resources to help us explain to my 5 year old grandson right away.

Unlike random information you may gather along the way that you either don't understand or don't remember where you put it, with the well thought out organization of the contents of the bags, everything is in one place. It is easy to add new info you may get, and that info that was beyond our needs then, is now still in place waiting for our use.

The bag also created a bond between the staff member of the hospital and us, that gave me comfort and I am sure it gave her joy to know she was helping us.

Thank you for all you do! May God bless you and all of those involved in this effort.

Jodi Chappell

6/30/09
My dearest Tracy Porter,

I have been thinking about writing this letter for months now.

On April 6th, 2009 our 30 year old son, Joseph, without explanation, drove his truck off of  I-4 and went 65' straight down to the street below. Obviously he sustained many injuries, but the most terrifying was of course the Traumatic Brain Injury.

As parents of another son afflicted with Cerebral Palsy, due to brain injury at birth, and having passed away 1 year before we were simply terrified. Joe suffered a closed-head injury with bruising in the front and rear of his brain.  He was put in a coma to calm him down and of course let him heal.   We were given a diagnosis of somewhere between "death and full recovery".  We felt like we were at a dead end for answers with the Dr's.with absolutely no encouragement.

Thank God we were given your tote bag with your phone number inside. Your kind words of guarded encouragement and instilling a sense of patience in us was the only thing that kept us going at the time.

I remember the Dr. asking Joe to show him 2 fingers and after failing to do so left us with a feeling of loss. I later took it upon myself to try to get through to my son. When I told the Dr. that Joe had responded to my command of 2 fingers by opening his hand and then closing all of his fingers, one by one into a fist they told me that didn't matter, it was reflex or unintentional.  However, at that point I knew he was in there and we would get him back. Please pass along that Dr's. are too busy and too concerned about their own future well being than that of the patients and while i praise them for saving his life i wouldn't rely on their opinions and would seek parents like yourself for guidance.

We spent 2 weeks sleeping and living in the ICU waiting room and the items in the tote bag were so much appreciated as they were things we didn't have to think about.

We went through the agitation stage for about 2 weeks and the jargon stage for about 1 week. We had a trach for 2 weeks and 2 weeks of rehab.

I am so grateful to tell you that Joseph is 100% recovered in less than 3 months and is even driving a car.  He will soon be reopening his Law Firm with a new understanding of life.

Tracy, I can't tell you what your kind words of encouragement and patience did for us during this time. 

Eternally grateful, Jeff and Luann Pate

7/10/09
Tracy,
 
Hello my name is Lisa Levy.  I'm sure you probably don't remember me.  I spoke with you in early May.  I live in Michigan and my nephew, David Marker, had been in a horrible motorcycle accident without wearing a helmet.  I was only in town a few days and was desperate to gather what information I could.  We have no family in Fla and my brother, Dave's dad, is a truck driver and goes all over the country.  Anyway,  I just wanted to take a moment to thank you again for the wonderful tote bag..it is a life saver.  I've been meaning to email you for such a long time to thank you for not only the tote but for your kindness and concern.  When we spoke on the phone you were so inspiring!!!  At that time it was about 5 weeks after the accident and Dave was still not responding...just highly aggitated, his vital signs and temp were all over the place.  At that time the docs were talking possible nursing home.  I can remember you saying to me, "Don't let anyone tell you at only 5 weeks after the accident that your nephew is going to end up in a nursing home!"  Honestly, you were the only one to give me hope on that long, lonely trip to Fla.  So I wanted to write and tell you how RIGHT you were.  Dave is doing extremely well.  He is able to talk and carry on a conversation (still a little slow, but he's doing great:-), He can feed himself, brush his hair and teeth.  He still has some limitations with his right side and is unable to walk at this time.  The plan is to transfer him to Brooks in Jacksonville (I've heard good things about there...I hope it's a good place).  At Brooks he will do some inpatient and then outpatient afterward...depending on insurance.  Unfortuantely he did not have insurance so now he has medicaid and disability.
 
His physical therapist says he has exceeded all of his expectations, cognitively as well as physically.  We are truly amazed and grateful for all of the care and support we have rec'd.  We still have some decisions to make as far as where he will go after rehab.  I'm not sure if he will come to Michigan or if he will have to stay in a group home/assisted living place.  I need to research abuot the assisted living and what that's about.  Do they have places specifically for brain injuries in Fla?    If you have any guidance or suggestions I would greatly appreciate it.  I hope all is well with you, your son, and the rest of your family.  You are truly an amazing person who touches the lives of so many at such a difficult time in their lives.
 
God Bless you,
 Lisa Levy
 
PS - I started a carebridge webpage for Dave.  It's under dmarker :-)  That was a great suggestion, especially with all of us being out of states.

7/18/09
Tracy.  Thank you for taking my call..  I just wanted to give u kyles webpage on caringbridge.  It is 'kylejames'

I will call you with questions.  Thanks again Tanya. 

We are at st marys trauma in wpb 

8/11/09
I just wanted to send a letter of thanks to you.  Thank you for helping my friends Holly and Mark Behrle in July when they really needed it.  Their son Ryan passed away of a brain injury while our families were on vacation together in Orlando.  She told us of the amazing story of meeting Tracy in the airport in Atlanta while returning home.  Holly also told us how much the tote bag really helped her get through some hard days.  That is way I am sending you a letter today.

Thank you for your time and helping out my friends when they needed it the most.  You all do amazing things! 

Laura Moll

9/14/09
I just wanted to say thanks.  My 14 yr old son suffered a
TBI in April 2007.  He wasn't expected to live.  

I was so grateful and touched to receive your survival bag.  It had every thing I needed to function and pull myself together.  I still carry around the business card file wherever I go. 

It pains me to know that the only way you could know what I needed was
because you had gone through the same thing.  I'm so sorry.

My son is alive and doing well.  Thank you for being there when I needed you most.

Tatiana Abernathy

9/22/09
Thank you for the wonderful bag with so much HELP --just getting into it. 43 year old daughter has been here for a week -- still in medical induced coma. Look forward to your comfort and wisdom!

Sheala Stanley

11/2/09
thanks for all you do!  My 23 month old has a brain injury and its hard to cope with but i get comfort knowing there are agencies out there like yours

Jackie

10/13/09
Hi Tracy,

About one month ago my brother died due to a terrible brain injury caused by a car accident. This all happened in Pembroke Pines, FL and he was treated at Memorial Regional's trauma center.  My mother, my stepfather and I spent six long grueling days at the hospital trying to hold on to hope that he would make it but unfortunately there was no chance for recovery.  The tote bag we received from mabii was an extraordinary gift during one of the worst experiences of our lives. We were amazed to read of the support and help available to families like ours and as a result we truly felt that someone somewhere really understood the "unbelievableness" of what we were experiencing watching our loved one under such painful conditions, sleeping at the hospital, not knowing why the doctor's were giving us hope or telling us not to have hope and on and on for six very long days.

We asked friends and family to make some small donations to mabii if they could and I was told that you wanted to get in touch with us.  I hope that whatever money was raised in Brian's name is helpful to others.

Thank you for your incredible work and generosity.  If I can ever be of service, please do not hesitate to ask.

Sincerely,

Monica Palacio (Brian's sister)

10/17/09
My fiancés name is/was Thomas Britton and was only 26. We had just moved to Florida three weeks before his accident. He was in Lee Memorial in Fort Myers. I am holding a fundraiser on behalf of my fiancé who unfortunately did not overcome is TBI in Florida 3 weeks ago. We are holding the fund raiser for you all where he and i lived our entire lives in Pa on November 27th. I was also wondering who to write the check out to once we receive the donations.
 
Thank you for everything you provided me with during my time in the hospital with the love of my life. The tote bag was amazing. My fiancé’s mother and I really did appreciate all that you gave us with the tote bag. It was nice knowing that someone else had been where we just were and was able to understand what we were facing.

The blanket, pillow, food, and everything else is what we needed so bad for those long days and nights at his bed side. We hope you continue to do what you are doing for many more years.  Its absolutely incredible

From the bottom of my heart, thank you!   Donna DiGiovanni-Britton            

POST FUNDRAISER NOTE from Donna December 2009
Hi Tracy. How are you? The fundraiser was amazing. The turn out could not have went any better. We raised $1,000 for your foundation. I am still waiting on more donations to come in. You will be receiving a check shortly. I am holding up. Each day is a different story. The fundraiser i held a week ago will be done annually. Thomas was extremely loved and his friends and family are more than generous when contributing to a foundation that did help Terry and I out during those few days.

12/6/09
Tracy,

I'm so sure that God put you in my path for a reason.  I hate to think that your son and your family have had to go through what you have to get to me, but I'm sure that you have and will continue to reach plenty of others.  He placed on my heart that it was time to address this, and that got me to you!  I really appreciated our talk tonight and needed it more than I realized!  I am going to call the Todds tomorrow and hope to meet with their group as soon as possible! 
I have believed for a year that God will use this injury for His glory, but now see how I can facilitate that further by educating myself on it.  I also realize, I may never see how someone else is touched by my life, and that's ok. 

Thank you so much for answering that phone!  I will keep you posted and hope to be of assistance to you at some point, in any manner!

Jessie Dorfman

12/21/09

I want to thank you for all that you do, the support that you provide is priceless. I regret to in form you that my son Alex Ryan Sanders lost his battle and is now a peace. On December 17th alex was taken into surgery to replace the bone flap that was removed, the surgery went well. When he got back to his room he had a small seizure and his brain started to swell instead of swelling up into the open space it went down around the spine. We were told that there was no brain function and my 16 year old son was gone. None of the doctors know why or how it happened. My son will be able to save lives. His heart went to a 15 year old boy, 1 kidney went to a 12 year old, the other kindney and pancreas went to a 46 year old man, and his liver was split between a 7 month old and a 12 year old. Alex was always a helpful young man and never had bad thoughts about anyone I know that he is happy that he can help others even in his death. I regret that we were unable to meet you and thank you in person. Again I thank you for everything you do and I know that Alex appreciates you.

Bob Sanders

Letters from the Hospitals & Support Groups
We encourage hospital staff to share their accounts of how these tote bags helped them during the course of a family’s stay. Nurses and social workers work very closely with the families providing as much comfort and medical care to the injured person. We are told on occasion how nice it is for them to be able to hand the family hope through this very compassionate program.


6/28/09
Dear Tracy

I am the Neuropsycholgist for the Brain and Spinal Cord Injury Program here at Tampa General Hospital. I want to thank you for the bags you provide to the families of patients in their time of crisis. Families appreciate the time and effort that goes into providing this service. They often ask about you and want to know why you do this. They frequently express their gratitude for this timely gift when they are feeling frightened and vulnerable. They especially like the warm blanket that you provide. Although they have trouble focusing on reading material immediately we use the books over the patients stay to help them to understand what is happening medically and psychologically. Thank you again for all you do.

Antoinette De Fazio, Ph.D.
Tampa General Hospital


June 2009
Dear Tracy,

I would like to take a moment and thank you for your commitment and dedication to the families of patients with traumatic brain injuries. The Mothers Against Brain Injury tote bags have proven to be a valuable gift for each of these families. These bags have given care providers a useful tool in aiding family members with support information to help them understand the medical information they have been given. That is in addition to all the other goodies in the tote. Recently in one of our family waiting rooms, I saw a mother using the pillow and blanket to take a nap while the two other family members were playing a game of cards. The opportunity for comfortable rest and a much needed distraction all in one bag! Keep the good work going.

Diane Reid RN
Trauma Clinician
Tampa General Hospital


7/1/09
We have been participating in the Mothers Against Brain Injury Tote Bag Program for the last four years through our level-one trauma center, Orlando Regional Medical Center. Being a level-one trauma center patients are often transported to us many miles from their home. The families of the brain injury patients welcome the tote bags and are often overwhelmed to receive this compassionate bag, free of charge, and are so appreciative.

Tracy Porter, the Executive Director, Founder, of Mothers Against Brain Injury, Inc, makes regular visits to our hospital to promote the program and deliver the tote bags so they are always on hand for us to present to families. She has made presentations on our ICU and neuro step-down units to promote the distribution of bags in a timely fashion and performs in-services to educate staff regarding the family’s needs following this critical injury. You couldn’t ask for a better spokesperson or advocate for those patients or their family members affected by traumatic brain injury.

Sincerely,
Dierdre Jarrett
Chaplain Supervisor
Orlando Regional Medical Center
Orlando Florida  

9/27/09 (From the author of “The Water Giver” Joan Ryan) http://www.joanryanink.com/publications.html

Tracy,
I'm blown away by the work you have accomplished. I wish we had been in a hospital that provided your tote bags.

I live in the SF Bay area but will be in florida mid-october for several book events.

Congratulations on your amazing accomplishment.
All best,
Joan Ryan