Our patient stories.

By Jill Kirsch | December 28, 2017
Original Publication on Jewish Link of New Jersey

Following Ari Goodman’s first stem cell therapy last year, to treat what doctors called severe low-functioning autism, The Jewish Link reported on his progress and his family’s hope that they would be able to help him continue his journey towards recovery.

Ari was first diagnosed seven years ago, after he began losing skills at the age of 18 months. His mother, Clara, and father, Daniel, a 1990 graduate of Frisch who grew up in Parsippany, explored all therapies available to Ari, but nothing was able to reach him.

The family persevered, finally learning of the Stem Cell Institute, a facility in Panama that was known for successfully administering stem cell therapy to patients with autism. Clara and Daniel were determined to help Ari receive that treatment but, with the procedure and other costs totalling nearly $20,000, they feared it was beyond their reach.

Clara, ever her son’s champion, reached out to The Jewish Link, seeking assistance in sharing her family’s story, and the response went well beyond what they imagined. The Goodmans, residents of East Windsor, were able to take Ari for his first treatment in May of 2016, and the results, noted Clara, were “miraculous.” Within weeks the family saw Ari begin “coming back to us. We started to see changes,” she said.

Feeling eternally grateful to the greater Jewish community for its help, and hopeful for the first time in years, Clara again reached out, in December of 2016, through a follow-up article in The Jewish Link. This time the Goodmans were not surprised by the outpouring of support, but just as grateful. “It is amazing how many people are right there with us. Everyone who has cared about our story has helped in some way,” Clara remarked.

Ari, now 9 years old, received his second stem cell therapy earlier this year, and Clara was thrilled to discuss his progress with The Jewish Link. “Since February, his awareness of everything is 100 percent there,” she said. “He responds. His receptive language is amazing. He’s able to answer questions. He just knows everything and has opinions.”

Clara reports that Ari is now able to spontaneously ask for things and express wants and needs, though still only using one word at a time. “He has a sense of humor now. He laughs,” she said.

He is able to read sentences, and can spell words and put them together to form sentences. In fact, at school Ari is no longer in the class for children with autism; his progress has allowed him to move to a class for students with “multiple disabilities,” where the students are more social and conversational. His teachers have told Clara that Ari adds much to the classroom, and both students and teachers enjoy having him there.

“My hope is that he’ll develop more language,” said Clara. “I hope to mainstream him and maybe have him attend a Jewish school one day. We would love for him to learn Torah every day.”

For the first time, Clara is anxiously awaiting Ari’s annual IEP (Individualized Educational Plan) meeting next month, as she has already been told by his teachers that he has met all of his goals and they want to expand on that for next year. “I used to dread those meetings,” she stated. “Now I can’t wait. I’m looking forward to every day and seeing what new things he can do.”

Ari is “loving and affectionate, full of hugs and kisses,” Clara reported. “Doctors said he’d never do that.”

She continued, “We were told he would never be able to do any of these things. He is showing more every day that he’s whole. It’s in there and once the stem cells heal him it will all come back. He is proving everybody wrong and showing that Hashem is in charge, not any doctor.”

The Goodmans are hoping that a third treatment will “show more revealed miracles,” added Clara. He’s not conversational yet; I want the social aspect to come. I know he’s not out of the woods yet. He has a long way to go,” but “every time we go we see more and more improvement.”

While trials using adult stem cells are now ongoing at Duke University in North Carolina, America still does not have any treatments available that might benefit Ari. “We are that much closer to the FDA approving treatment,” Clara said. “But even then it still might not be covered.”

In the meantime, the Goodmans believe they must continue these treatments. “The stem cell therapy is allowing him to respond to all the therapies that weren’t working before. His body is healing and is open to it now,” added Clara.

“I feel like I have him back again and it’s the most wonderful feeling in the world,” she continued. “We felt like we lost him when he was diagnosed. Ari is proof that miracles do happen.”

“Ari has been through so much and he is still such a happy kid. He inspires others. I really believe that his mission in life is to heal the world; he’s helping us all be better people,” Clara stated. “His middle name is Netanel, which means ‘gift from God.’ He really is.”

Clara hopes that her family’s journey will provide strength to others who have children with autism. “There is an answer. Don’t ever give up on your child,” she said.

To help the Goodman family provide another stem cell treatment for Ari, please visit www.gofundme.com/aristemcelljourney or, to make a tax-deductible donation, send a check payable to “Congregation Toras Emes,” with “for Ari Goodman” noted in the memo line, and send ℅ Clara Goodman to 523 Nettleton Drive, East Windsor, NJ 08520.

By Jill Kirsch

A Miracle for Martha
A woman’s journey of deliverance from pain

By Deanna Kirk Daily Sun Nov 26, 2017 (Link to original story)

The last 12 months have been a giant series of ups and downs, an extreme roller coaster for Martha Phillips.

Last December, her father-in-law battled brain cancer, which affected the lives of all of her close family; and her only brother died very suddenly from a pulmonary embolism. They were buried a week apart.

The battle with Multiple Sclerosis

Martha had been fighting her own battle against Multiple Sclerosis since a diagnosis in 2010. This disease causes the body’s immune system to attack its own tissues, and the malfunction destroys myelin, the fatty substance that coats and protects nerve fibers in the brain and spinal cord, according to the Mayo Clinic.

Phillips’ had seen her own ups and downs in that battle as well, with medications that caused huge weight gain, severe intolerance to heat, and intense bouts with pain. She tried many different protocols and medications, but what seemed to make the most difference was an extreme dietary change, which led to a loss of 72 pounds, acupuncture, adjustments, and regular massage therapy. Under the care of Dr. William “Doc” Davis in Ennis, she went from 10 prescriptions down to two, and did quite well for nearly six years.

But after the bout with all the stress during December 2016, Phillips discovered her body just could not cope with all the continuous stress demands placed upon it, and she suffered a pretty severe setback. She was forced to go on disability from her job.

“The Tysybri I was having infused regularly has a black box warning,” Phillips said. “I had to sign paperwork when I started taking it, that I knew it could kill me.”

The neurologist offered several other choices of medications, but all were either equally as risky with not as many good results, or more risky with even worse results.

“To me, it felt like my only choice was going backwards, and to me that was unacceptable,” she said.

Phillips learned about a somewhat-new innovative treatment for people with Multiple Sclerosis, and it was not being done in the United States yet, but for $25,000 one could fly to Panama City, Panama and have the complete treatment done and stay right in the same hotel where the treatments are done.

The blessings of how all her funding came together to have the treatment were chronicled in a story that ran in the July 8, 2017 edition of the Daily Sun.

But this story is about the trip itself, the treatment, and how her life has been since the trip to Panama.

Life since Panama, and new stem cells

It’s been roughly three months since Phillips returned from Panama. She took her little sister Robine Reeves with her, and the things she noticed right off were 1) the Atlanta airport is awful, and 2) Panama is a lot like Texas with regard to the weather.

“It’s very Americanized — they take American dollars, Spanish is their primary language but it’s OK if you don’t speak it,” Phillips said. “The people in Panama are so super friendly, even the kids. A group of junior high kids got on the bus with us and many of them spoke to us. That was the day Vice President Pence was there, and we, stupid Americans, didn’t know he was there, but his motorcade was very impressive.”

Phillips notice that the Panamanian president’s motorcade also came through that morning, and they watched it all from the rooftop of their hotel where the pool was. And some guy from London had to tell them their own Vice President was there.

“The clinic has a very impressive concierge,” she said. “Someone was there holding a sign with my name on it at the airport. She took us to the VIP lounge and whisked us through customs and the fingerprint deal very quickly and painlessly, and called our driver who works for the clinic. He took us to the hotel, and showed us shopping and restaurants along the way.

“They don’t have really good restaurants, they just look for consistency,” she said.

“The next day, I had a medical checkup and blood work. The second day, they gave me stem cells through an IV. I also had two subcutaneous injections in the groin/lymph region, which were more painful than the IV.”

Phillips also had physical therapy that day which consisted of evaluation, stretching exercises, balance and strength.

“The stems cells they use are umbilical cord stem cells, which women donate when they give birth,” she said. “Since they are brand new, they double every 24 hours. They’re a perfect source because they multiply so fast. I got 1.33 million stem cells.”

The way the stem cells work for MS and some other autoimmune diseases they’re using them for is that they reset the immune system, she said. They do not go in and repair the damage the MS has already done to her brain, but there is scientific evidence that shows if MS stops attacking the body, the body can heal the brain and spinal lesions.

“They believe that because there’s another virus that does the same kind of damage to your brain, but because it does not continue to attack the brain, people recover from it,” Phillips said.

There was another day of treatment just like the previous day, then the following day the sisters flew home. On the day of the blood work and checkup, the doctor discussed diet and supplements with Martha.

“He started describing a high fat, low carb diet, and I said, ‘Do you mean a keto diet?’ and he said ‘Yes,’” she said. “He said I would be throwing my $25,000 down the drain if I did NOT follow this diet and take supplements.”

Phillips had already followed this diet in the past, but wasn’t following it very strictly at the time.

“When I went to Panama, I was taking 10 prescriptions,” she said. “I am taking one now, 90 days later.

“That all actually happened within the first two weeks.

“I feel amazing. I feel like I can conquer the world. I’ve had more energy than I’ve had the entire time I’ve had MS.”

Philips said when she made her trip to Panama, her thought was if she could get rid of enough of the pain and fatigue in order to return to work, she would be happy.

“But I got SO much more — I actually have no symptoms right now.”

She’s also no longer a slave to heat intolerance. Before, when she went to CrossFit, she had to wear a cooling vest full of ice packs and stand in front of a giant fan or A/C unit in order to work out. The least little bit of heat would cause her to become very, very sick.

“The first time I worked out after my transplant, Nick (Biles) came over to check on me, and I cried and said ‘I can’t remember the last time I worked out without heat intolerance,’” she said.

The heat intolerance makes the MS Symptoms you have temporarily worse until your body cools down. That can happen with one degree of change in body temperature, she said.

“It’s really weird to me now, to learn how to live without thinking about all those things,” Phillips said. “For so long, I’ve had to consider all sorts of eventualities in every scenario I find myself in.”

Judi Lecoq, 57, of Arlington, has been traveling to Panama once a year since 2010 for umbilical cord stem cell treatments to treat her multiple sclerosis — an option that’s not available in the U.S. Because the treatment is controversial and not FDA-approved, she must pay for the medical costs as well as travel. But Lecoq sees improvement with each treatment and says she’s doing much better than doctors originally predicted when she was diagnosed 20 years ago.

“When I come back, I feel a complete change in my energy level,” she says. “Before my last trip, it was hard to get anything done or to concentrate. My feet were numb; they’re not numb anymore.”

From – Ticket to Health: Do your homework before traveling for medical procedures

For more information about stem cell therapy for autism please CLICK HERE.

Dimitri’s parents discuss his progress after his first round of stem cell treatments for autism in Panama.

Interviewer (I): Today is August 4th, 2017. Please give your name.

Dimitri (D): Dimitri

(I): Your last name?

(D): Weaver

(I): Your age?

(D): Six

(I): Mom, his diagnosis?

Mrs. Weaver (MOM): He was diagnosed with autism at the age of three.

(I): Ok, so this is his second stem cell treatment?

(MOM): Second stem cell treatment, yes, about a year apart.

(I): Can you describe his improvements?

(MOM): I’ve definitely seen a lot of growth since last year, mostly in language [and] comprehension. He started school last year. He’s reading. We’ve notice a lot of changes with being able to sit still and focus at school. We’re still struggling in that area but last year we weren’t sure if he was going to be able to go to kindergarten and he’s doing well. His first year, he’s now participating in sports. He just started karate, and doing really well with that. Mr. Weaver

Mr. Weaver (DAD): I think that, yeah, he’s had a lot of remarkable changes in the past year. He’s done really well with kindergarten as you’ve said.

(MOM): Overall, the teachers that saw him last year for evaluation for his IEP – and then we had an IEP meeting this May, not even a year apart. They said he looks like a different child. So they weren’t expecting the growth that he’s made this year in school.

(I): Anything else you would like to mention? (MOM): We haven’s seen any regressions or any negative, no side effects. All we’ve seen is growth. That’s why we’re here again this year. It’s been all positive for us.

(DAD): It’s been a great experience.

Interviewer: Today is July 28th, 2017. Can you give me your full name and diagnosis?

Joyce: Yes. My name is Joyce Adair and I was diagnosed with multiple sclerosis.

Interviewer: So, this is your second treatment?

Joyce: Yes.

Interviewer: Could you tell me your experience after the first treatment?

Joyce: Well, after the first treatment last year in April of 2016, I noticed a big change in my energy. I was able to finally go out and do things with my family and friends that I had been unable to do for years. I noticed a change with my pain level. It didn’t go completely away but it did get better and I was able to cut back on some of my medications at that time.

Interviewer: And you also mentioned that you stopped using a wheelchair?

Joyce: Oh, yes. I wasn’t using the wheelchair. I was able to walk on my own – not using a cane or anything at that time. I could put full weight on my legs.

Interviewer: We just finished your second treatment. Can you mention if you have had any improvements this week?

Joyce: I’ve had a lot of improvement this week. When I came on Sunday, I was in terrible pain. I was even unsure if I should come or not because I was afraid to travel on the plane with the amount of pain that I was having in my right leg. But once I had my first treatment this week, I noticed a big change in my pain and I also have noticed a big change in my energy. I have a lot more energy and I can tell that it’s definitely getting better.

Interviewer: Thank you very much.