Tommy's Brave Journey

$19,234 of $65,000 goal

Raised by 190 people in 27 months
Tommy Haack is an Alice Birney 7th grader suffering from Complex Regional Pain Syndrome (CRPS) – a rare, debilitating nerve disease that affects 1 in 4,000 people every year. The pain from CRPS is ranked as the most excruciating form of chronic pain that exists today. While Tommy has the unyielding support of his mother, Susie, brother David, and his friends and school community, he needs your help to raise money for the medical treatment he urgently needs.

For nearly two years, Tommy has not been able to walk because of unremitting, tortuous pain. His leg feels like it’s on fire and being stabbed constantly. Movement only intensifies the condition, so Tommy cannot tolerate a simple car ride without shrieking in agony – which isolates him from his school and his friends.

A progressive disease of the sympathetic nervous system (one of the two divisions of the autonomic nervous system), CRPS is little understood and appropriate treatment is hard to obtain. Tommy has seen countless specialists, with little relief from his physical and mental anguish. But there is new hope.


Tommy has recently been admitted to a program for CRPS treatment with an experienced pediatric specialist at the Florida Spine Institute. The program includes IV Therapy, Trans-cranial Magnetic Therapy (TMS) and Hyperbaric Oxygen Chamber Treatments – all therapies that have shown success with other CRPS sufferers. Unfortunately, these therapies are not covered by any insurance. Tommy’s family does not have the financial resources to fund this urgent and essential opportunity for a cure.

Even a small contribution to Tommy’s family would help get him the medical treatment he critically needs. It’s his only hope to end the isolation that comes with debilitating around the clock pain and to recover his childhood. With your help, Tommy can get back to the things he loves – playing with his classmates and his brother, creating art and music and exploring the outdoors. Please contribute what you can. Thank you.
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Happy New Year!
We are so appreciative of your support.
Thank you for being there for us throughout the year.
Much love,
Susie, Tommy & David
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I have 22 days to try to raise the money for Tommy's trip to Houston to see Dr. Rhodes and receive the Vecttor Therapy. Community fundraising has brought in $400 so a gofundme is needed. Tommy has been scheduled for an appointment to see Dr. Rhodes and begin the Vecttor treatment on January 9th, 2017. This was the only week that was available for us to go. Unfortunately, CRPS is very expensive and none of the therapies that help reduce the pain are covered by insurance.

My wish for Tommy is to walk down the 8th grade graduation closing ceremony.

We are looking forward to getting this additional help for Tommy's CRPS and help give his body some healing and relief.
Please keep him on your prayer list. This trip to Houston will take a huge toll on his body. It's difficult for him to ride in a car more than 10 minutes at a time. This trip will take us over 12+ hrs. Everything he does takes a lot out of him and exhausts him.

Please, if you can we'd appreciate any help you can give toward Tommy's Vecttor Therapy.
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September 2016

Tax Deductible donations of cash, check, card or MO can be sent to:

Tommy's Medical Fund
(F.O.E.) or
Fraternal Order of Eagles Roseville Aerie #1582
210 Lincoln Street
Roseville, CA 95678
Att: Colleen DeMerritt, secretary
Memo: Tommy's medical fund
Tax id # 940486934


Thank you for supporting us through your thoughts and prayers as Tommy goes through more treatments. Your prayers have been heard and progress is being made — even if it is just a little at a time. With this condition, any progress is huge because of the momentum to do otherwise is the nature of this beast.

It’s a long road, and I am reaching out for support again in the form of contributions as well as sharing this GoFundMe link.

Additionally, I am looking for large sponsors who are specifically looking for a tax deduction. There are individuals out there who are willing to sponsor a sick child for a tax deduction, especially if it's a lifetime of illness disease. I am working with a 501c3 and can get you this information (which is different than donating here).


Tax Deductible donations of cash, check, card or MO can be sent to:

Tommy's Medical Fund
(F.O.E.) or
Fraternal Order of Eagles Roseville Aerie #1582
210 Lincoln Street
Roseville, CA 95678
Att: Colleen DeMerritt, secretary
Memo: Tommy's medical fund
Tax id # 940486934


These are the out of state, uncovered medical therapies that have proven helpful over the last 9 months.

Progress is being made and let me tell you about it.

Since starting therapy this year, Tommy has been in some form of treatment for 21 out of the last 28 weeks. Much of the treatment was not in California. He's had three rounds of IV therapy on the east coast , 40 hyperbaric oxygen treatments and a week at the Neurological Relief Center in northwest Arkansas. All are having a positive effect on him but we won't be able to continue without paying off the mountain of medical bills. All of these are out of pocket, no insurance covered bills.

After 8 weeks of infusions over three months early this year he then went every weekday from April to June for hyperbaric oxygen treatments (hbot).

In September, Tommy had a pain breakthrough during infusion treatments in Florida. He went in with a 10+ pain level and in the second week of treatment it dropped to a 1-2 level and still there. (Huge improvements in pain).

All funds collected go towards paying off nearly $70k in medical bills and hopefully adding an at-home treatment using the Vecttor machine offering us the possibility of traveling out of state less.

Your contributions offer hope through these treatments.

If you're interested in the treatment, please read :
http://www.ivketamine.com/dr-hanna/

Dr. Hanna and his staff have been supportive and compassionate every step of the way.

Additionally, Tommy recently had a one week trial with a Vecttor machine (using electro stimulation on acupuncture points) at the Neurological Relief Center in NW Arkansas. After the first few days of this treatment he felt a positive response with his energy level, deeper restorative sleep (after 18 months of insomnia), an increase in resilience and a big increase in appetite. This is a big deal, as he has nausea & vomiting every day and night. While there, we talked with more than 10 other Complex Regional Pain Syndrome (CRPS) patients and they agreed that those were the first signs of improvement. Most patients had relocated and were onsite getting treatment for the least 8-12 weeks and were out of their wheelchairs and walking for the first time in years. This is so encouraging and Tommy needs to add this modality of treatment. Because we cannot relocate for 12 or more weeks it was suggested that I purchase the treatment machine for $5,000 directly from the developer and use it at home twice a day (80 minutes each time = 160 minutes/day) and supported remotely. This is a big investment but considerably less than relocating.

Here's the information about Vecttor technology and the developer in Houston:
http://www.alanneuromedical.com/

Dr K VanderMerwe at the Neurological Relief Center in NW Arkansas:
https://www.facebook.com/TheNeurologicReliefCenter/?fref=ts

Lastly, another successful treatment that has only been available in Mexico until recently, called MLT for Manual Ligament Therapy is coming to Sacramento in October. I called and inquired and after several conversation the Therapist who created this who lives in Mexico and 2 other Dr.s who have joined their efforts made the decision to come to Sacramento to hold a one week workshop for patients with severe chronic pain. They made this event here specifically to bring it to Tommy so he would have to travel for it. Wow - talk about Miracles.

All of these treatments are helping, not one will be the cure, but cummulatively they are havig a profound effect and he needs to continue with this. Especially the ones where he doesn't have to travel - which are energy zapping. Not a resource he has to expend.

Vibrations from car rides are extremely difficult and 10-15 minutes is the maximum length before he's exhausted and overwhelmed with painful stimulation. With continued treatment he has the opportunity to have sustained lower pain levels.

Please contribute if you can and share this gofundme page (8% collected by Gofundme) or contact me to make a tax deductible donation through a 501c3. The process is different than donating here, so please contact me.

I know this is a lot of information, but I felt if you were kind enough to donate your hard earned money you deserve to know where and what it's being used for.

Again, we appreciate your thoughts, prayers, support and encouragement. Getting this care for Tommy would be completely impossible without your help.

Thank you for all the love and support !

With all my heart,
Susie
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Happy Mother's Day!
Now, any donations made to Thomas Haack's medical fund through the following nonprofit are -

TAX DEDUCTIBLE

Fraternal Order of Eagles Corporation
Roseville Aerie #1582
Must Specify: c/o Tommy's Medical fund


Please contact me at (916) 617-6924 for their federal tax id to make your donation tax deductible.

Fraternal Order of Eagles is about People Helping People and is a value that the Fraternal Order of Eagles has held for more than a century. It’s a statement that guides the charitable actions to help members and their families as well as fellow Americans affected by illness, injury or catastrophe. As part of the charitable philosophy, the Eagles pride themselves on giving back 100 percent of the contributions received.
Thank you Eagles!

For more information about this nonprofit visit http://www.rosevilleeagles.com/about-us/#NonProfit

Please share with any individuals, organizations or corporations that are interested in supporting children with disabilities in our community. Effective Treatments for CRPS/Rsd like Infusions, Hyperbaric Oxygen Therapy and many more are NOT covered by insurance or even Shriners Hospital because it's not a "covered condition". Please help Tommy get the treatment he needs.
Thank you.
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Read a Previous Update
Amador Rodriguez
24 months ago
2
2

To my FB friends and to whoever might read this note. Let's unite our thoughts, hearts and minds to send Tommy bubbles of white light to sorround him and his family into a healing environment. I would like to invite you to join me on February 28 at 12:00 noon for one minute of meditation, thanksgiving and humble petition for Tommy's full and permanent recovery. From Argentina to Spain, from Italy to Peru and the UK, from New York to Texas and Wisconsin, Arizona, Florida, Nevada, Michigan, Colorado, Maryland, New Mexico and California, please take one minute of your busy day on Sunday , February 28 at 12:00 noon your time , extend your hands toward the sky and ask God, whatever you conceive him/her to be, to bless Tommy and any child who is in pain. With the many time variations worldwide our petitions will reach the heavens through the entire day. Our united thoughts and prayers WILL BE ANSWERED. Thank you

+ Read More
Kirsten Anderson
15 months ago
1
1

My thoughts and prayers are with you, Tommy. You are a strong boy and have great things to be hopeful for. I am so happy to hear your treatments have been helping. What I found most helpful for my own CRPS since 2010 have been outpatient ketamine infusions in Santa Cruz: www.ketaminetherapy.com and booster infusions at a clinic in Orangevale. You are a beautiful soul.

+ Read More
April Penna
24 months ago
1
1

I am so thrilled to hear Tommy is in remission! Will continue to pray ..God hears our prayers. Hang in there Tommy,,You will be fine & mom also. ♥

+ Read More
Amador Rodriguez
25 months ago
1
1

Tommy; You are a brave boy. Your family, friends and people you have never met are sending you positive thoughts, good wishes and bubbles of light. You are going to be OK. Never give up. When I visit the Children Hospital I see a special sparkle in each child's eyes. Their faith, love and hope are alive. Blessings of peace, fortitude and love to you and your family.

+ Read More
TracyAnn Kosar
25 months ago
1
1

My heart and prayers go out to you Tommy and Susie! As I was reading your story I could swear I was reading our story. Everything is exactly the same. My son Tristian is in 7th grade and developed CRPS in Oct 2105. It has been a long 4 months. We are new to CRPS and I am still learning about it and trying to cope with our new life. Tristian's fb page is: Tristian's Journey with Complex Regional Pain Symdrome. Please friend me on fb and contact me. I know your agony and struggles are real for I live it as well. Soft hugs for Tommy and a big hug from one CRPS Mom to another CRPS Mom. Sending prayers!

+ Read More
April Penna
25 months ago
1
1

Tommy ...You & your family are in my thoughts & prayers ♥

+ Read More
René Rylander
8 months ago

Following a fall and surgery to my left hand I was diagnosed with CRPS. I was researching Vecttor and saw that you had a gofundme to purchase one. I'm wondering whether you purchased it and if it provided any relief for Tommy.

+ Read More

$19,234 of $65,000 goal

Raised by 190 people in 27 months
Created November 27, 2015
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RP
$100
Rena Pelenio
8 months ago

Hi Tommy.You don't know me. I am sorry for what you are going at such a young age. My husband was diagnosed with CRPS when he was only 22 yrs old. He is now 46 yrs old. Back in early 1990s it was known as Reflex Symphatic Dystrophy RSD. I know what you all are dealing with. I wish we could donate more. God bless.

$300
Anonymous
13 months ago
1
1
$50
Anonymous
13 months ago
1
1
$100
Anonymous
14 months ago
1
1
MH
$100
Myrna Hernandez
14 months ago
1
1

Merry Christmas, hope this helps meet your goal. Only wish I could give more. From Emilio and his family

$25
Karen Worobey
14 months ago
1
1

Sending you blessings for healing and safe travels on behalf of my granddaughter Evangeline in 1st grade at Alice Birney!

SR
$100
Sylvia Rodriguez
14 months ago
1
1

Get better, Tommy. I'm always sending you strength and hope, Susie.

Amador Rodriguez
24 months ago
2
2

To my FB friends and to whoever might read this note. Let's unite our thoughts, hearts and minds to send Tommy bubbles of white light to sorround him and his family into a healing environment. I would like to invite you to join me on February 28 at 12:00 noon for one minute of meditation, thanksgiving and humble petition for Tommy's full and permanent recovery. From Argentina to Spain, from Italy to Peru and the UK, from New York to Texas and Wisconsin, Arizona, Florida, Nevada, Michigan, Colorado, Maryland, New Mexico and California, please take one minute of your busy day on Sunday , February 28 at 12:00 noon your time , extend your hands toward the sky and ask God, whatever you conceive him/her to be, to bless Tommy and any child who is in pain. With the many time variations worldwide our petitions will reach the heavens through the entire day. Our united thoughts and prayers WILL BE ANSWERED. Thank you

+ Read More
Kirsten Anderson
15 months ago
1
1

My thoughts and prayers are with you, Tommy. You are a strong boy and have great things to be hopeful for. I am so happy to hear your treatments have been helping. What I found most helpful for my own CRPS since 2010 have been outpatient ketamine infusions in Santa Cruz: www.ketaminetherapy.com and booster infusions at a clinic in Orangevale. You are a beautiful soul.

+ Read More
April Penna
24 months ago
1
1

I am so thrilled to hear Tommy is in remission! Will continue to pray ..God hears our prayers. Hang in there Tommy,,You will be fine & mom also. ♥

+ Read More
Amador Rodriguez
25 months ago
1
1

Tommy; You are a brave boy. Your family, friends and people you have never met are sending you positive thoughts, good wishes and bubbles of light. You are going to be OK. Never give up. When I visit the Children Hospital I see a special sparkle in each child's eyes. Their faith, love and hope are alive. Blessings of peace, fortitude and love to you and your family.

+ Read More
TracyAnn Kosar
25 months ago
1
1

My heart and prayers go out to you Tommy and Susie! As I was reading your story I could swear I was reading our story. Everything is exactly the same. My son Tristian is in 7th grade and developed CRPS in Oct 2105. It has been a long 4 months. We are new to CRPS and I am still learning about it and trying to cope with our new life. Tristian's fb page is: Tristian's Journey with Complex Regional Pain Symdrome. Please friend me on fb and contact me. I know your agony and struggles are real for I live it as well. Soft hugs for Tommy and a big hug from one CRPS Mom to another CRPS Mom. Sending prayers!

+ Read More
April Penna
25 months ago
1
1

Tommy ...You & your family are in my thoughts & prayers ♥

+ Read More
René Rylander
8 months ago

Following a fall and surgery to my left hand I was diagnosed with CRPS. I was researching Vecttor and saw that you had a gofundme to purchase one. I'm wondering whether you purchased it and if it provided any relief for Tommy.

+ Read More
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