Tuesday, September 22, 2009

Global Stem Cell Conference

I wish to share with you how grateful I am to have been blessed with a wonderful trip to California this past week. I have been on an emotional roller coaster…and because of this trip, was able to put so much into perspective that I truly came away from this experience knowing that Mailia will be helped and healed!

I found out over a month ago that Dr. Zannos Grekos would be presenting at the Global Stem Cell Congress in San Jose, Ca. on Sept. 12 . I knew it would be a good opportunity to meet Dr. Grekos and his team face to face where I could spend some good quality time with them going over Mailia’s past and current medical status, and in doing so…finding out what procedures would be involved and discerning the processes and planning that would bring all this to fruition.

After watching his presentation at the conference with 7 other stem cell experts from around the globe, I met with Dr. Grekos and his team from Regenocyte and quickly summed them up to be genuinely helpful, caring, concerned for Mailia and motivated to help, guide and assist us as best they can. They did not offer any guarantees in this process, making sure that we knew the risks involved, as with any procedure.

Nancy Trombino, Director of Patient Services, me and Dr. Zannos Grekos, Director of Cardiology & Vascular Disease

I was informed that Dr. Grekos has a great staff of doctors and specialists in the Dominican Republic lined out for Mailia and will be with us every step of the way.

I also had the opportunity while there to meet with a couple of Dr. Grekos heart and lung patients. One was Nahla and her 10 year old son Cal, whose condition is similar to Mailia’s and I was thrilled to see how good he looked and felt, post stem cell treatment 5 months now.

They were there to have Cal undergo a procedure to close the hole in his heart…an ASD. Although he is not considered Eisenmenger’s like Mailia, he still had high pulmonary pressures (pulmonary hypertension). This past Wednesday, Cal was finally operated on in San Francisco…and sitting here on pins and needles, waiting for news of a positive outcome was not easy.

But it came! By the grace of God and a lot of prayers from so many folks, he did great and his lung pressures came down! This I believe, is a testament on how the stem cell treatment and corrective heart surgery has changed Cal’s life and that of his family.

I also had the opportunity to briefly visit with another young patient of Dr. Grekos with a similar condition to Mailia’s and she also, is doing much better now.

Culminating this incredible trip was connecting with the heart surgeon that we referred to Cal’s parents that we hope will complement as well, the Dr. Grekos stem cell therapy and journey for Mailia. His name is Dr. Michael Black, Chief of Cardio Thoracic Surgery at California Pacific Medical Center in San Francisco.

He like Dr. Batista, who we wrote of on Mailia’s web site…is a true pioneer of medicine. I mentioned to him that Dr. Batista has had several roadblocks impeding the completion of his hospital in Brazil and that we needed to find a surgeon here in the states that would espouse his recommended treatment for Mailia and get her surgically corrected soon after her stem cell procedures. We are grateful he has agreed to take Mailia on as his future patient.

Dr. Black had just operated on a little boy that Sunday morning…4 hours prior to my conversation with him. He is 24/7…dedicated to helping and serving. An intelligent and wonderful man. He told me he was going to help Mailia get better…and do everything in his power I believe, to make a difference in her life.

This trip and the connections I made that were divinely guided this past week, I am so very humbled and grateful for. So now, I am doing what any loving family member would do, and should do. I am reaching out to our network of friends, family, co-workers and strangers to ask and appeal for their help in any way that they can to help raise the funds required to get Mailia treated. Our insurance does not cover the costs associated with these therapies for reasons outlined on this web site.

Please remember that any amount or effort, no matter how big or small...helps move Mailia closer to the treatments she so desperately needs. We are so grateful and blessed for your time and energy, and wiliness to help! We also thank you for keeping her in prayer.

All our gratitude, love and blessings!

Saturday, September 19, 2009

Signs from our Children....a Message of Hope. Ashley Gallant June 30 1982 - July 31 2009

Shortly after Mailia’s diagnosis of Eisenmenger’s syndrome in 1999, while frantically searching the internet for other’s with her condition, I came across a family from New Brunswick Canada whose daughter Ashley…had also been diagnosed with Eisenmenger’s. Her mother Gerri, was a Godsend to me. She conversed with me via phone and wrote poetically, about her children and their journey.

In her last e-mail to me, one I have hung on to for over 10 years…she wrote me a poem that a friend had given to her when her kids were first diagnosed and she was feeling really down…

I know that you are feeling
disillusioned now.
But life has a way of balancing
the sorrow with the joy.
the disappointment with the hope.
the emptiness with the meaning.

Someday, my friend, you will
look back on this time
in your life
As a period of learning, growing
and discovering
your own strength.

Until the sunshine comes back
into your life
I am your friend,
And know…
I really do care.

I have kept and cherished this poem and recited it to myself countless times. But I have also held a special place in my heart for Ashley and her family and a connection that is difficult to describe.

A few days after the Tri City Herald article came out for Mailia’s Miracle, I was reflecting and questioning our path forward. Had we done the right thing? How could we ask for help for our daughter and not feel the apprehension of not feeling worthy or deserving of wanting our daughter to be healthy and healed. I apologized to myself for thinking these thoughts and felt, no matter what…we would do everything in our power to help our daughter.

While pondering these thoughts…I got a feeling or urge to head to my computer to google a phrase that I am not sure, of its origins…but now can confirm, it was divinely sent. I typed in the words: Eigsenmenger’s Girl. To this day…I am stunned and awestruck at what I was driven to do. The first post at the top of the page was a blog titled Confessions of a Girl with Eisenmenger’s. Sunday, July 12, 2009.

It is my hope that you will google that phrase or click here to be directed to Ashley’s blog post. While reading it…I had no idea it was Ashley as she signed and posted her name as Scooter.

When I read the last paragraph she wrote, I got very excited and tried to communicate with her through her blog…but it kept bouncing me out. I wanted to tell her that YES! She was not alone and that we could empathize with her…and guess what? A possible miracle for her as well…for I could not wait to tell her what we have found through years of waiting and praying…that stem cell therapy in conjunction with the heart being repaired…was now being validated as a means to treat and possibly cure Eisenmenger’s.

That evening, while watching a baseball game with Mailia’s favorite team, the Tri City Dust Devils…I continued to read and share Ashley’s blog with my family and friends, thinking how I was going to contact her.

But by early morning, something that I had read over and over struck a cord and jarred my memory. Didn’t Scooter say she was now 27? Did she not reference the fact that she had started lung bleeds when she was 16 years old? How coincidental…that my friend Gerri had told me in her e-mail back in 1999 that her daughter Ashley had been having lung bleeds…and also told me the same story as I had read in Scooter’s blog…that her brother was also diagnosed with a hole in his heart that was repaired early on.

That was it…I had to find Gerri’s e-mail and quickly phone her to confirm if this was Ashley. Sitting next to our computer is our file cabinet which has been the home to this e-mail correspondence for over 10 years. It has always been within reach…and have called Gerri on a couple occasions to check in but now, this was going to solve this once and for all.

I called and remember asking “is this Gerri” ? A yes came…and I said “This is Andrea Goforth from Pasco Wa., Mailia’s mom…I just wanted to call and say hello and visit with you about Ashley.

She told me they had just lost Ashely…that she died July 31st.

I was in shock. I could not find words…only tears. As I listen to Gerri cry and speak of Ashley…I know she found comfort in knowing why I had called her in the first place. Because of Ashley. That is the only reason I can possibly give logic or validation to.

Gerri told me she had been praying that someone would contact her about Ashley. I said I felt in my heart that Ashley wanted her to know she was okay. My questions and feelings were…why now? How did this happen?
The answer came this last week, as I was headed out the door to San Francisco to seek my own answers concerning Mailia’s future miracle. I got a card from Gerri with a gorgeous photo of Ashley…in her graduation gown, beautiful smile and auburn hair like Mailia’s.

I am so glad that you called the other day. This last month has been so hard for us. Ashley was such a huge part of our lives. We did so much for her that she could realize her dreams, that now I feel very lost.

She was a girl that taught us much more than what we taught her. She enjoyed her journey through life. Never taking anything for granted. She celebrated all of her small accomplishments and never looked too far ahead. She left her mark on everyone that she met. Please keep in touch!!

P.S. Last night I said a special prayer for your daughter and I know that Ashley will watch over her. May God bless her!

Love, Gerri

That alone…her statement that Ashley would watch over Mailia is a testament to the power of faith and love…yes I know Gerri…Ashley will always be apart of our lives and the divine connection will always be there. Thank you!

To Ashley…all our love and gratitude sweetie. You will forever be in our thoughts and hearts. It is our hope that your story will be carried throughout time. You are not forgotten…you will never be forgotten.

Friday, September 18, 2009

Tri City Herald Follow up Editorial Opinion

Our letter to the editors on September 2, 2009
Dear Editorial board…
I just wanted you to know how very grateful we are to you and the Tri City Herald for affording us to share our daughter Mailia's story. Donations have started to come in locally and we have already raised $5,500 thanks in full…to you and your staff and generous readers.

We pray the next several weeks, with some letter writing, blogging and fundraising we can get there.

I would like to comment that I got blind sided yesterday while I was reeling from excitement from the editorial article and saddened at the same time from receiving news that a daughter of a dear friend of mine from Riverview, New Brunswick Canada passed away a few weeks ago from the same disease as Mailia. Ashley's obituary...

Her name was Ashley and I was led or maybe "divinely guided" yesterday to Google Eisenmenger's Girl where I found her personal blog and later, put two and two together and knew in my heart…it was my friends daughter Ashley and that she wanted me to contact her mom and tell her she was okay…but also, that Mailia would be okay as well.

Her last few words in her first post hold meaning as I validate her concerns and wishes so…I will blog her story as well in tribute to her and all who are trekking down this Eisenmenger's journey.

I also want to bring to your attention, that I had been struggling with the fact that maybe people do not believe how serious Mailia is…but I know Ashley came through yesterday and today, loud and clear…to help with this process I think.

I hope to have some time to update Mailia's pages on her web site to validate and acknowledge all her wonderful benefactors and to keep everyone abreast of the financial stream and where we are at any given point.

We have had an outpouring of praise for your writing and journalism covering Mailia's story…folks tell us they truly were inspired and loved it!~

Thank you Ken, Rick, Chris, Lori, Matt, Michelle and everyone else we may have not mentioned... We are truly grateful!
Andrea & Max Goforth

Editorial Opinion - Sept. 1st.

A little help by lots of folks adds up to a big difference

By the Herald editorial staff

For parents, watching a child endure life with a debilitating condition is heartbreaking enough. Knowing there might be a way to help that child but being unable to afford the procedure must be agonizing.

Max and Andrea Goforth are hoping the community's generosity will help them pay for an experimental surgery for their daughter, Mailia, who suffers from Eisenmenger's Syndrome -- a large hole in her heart that causes high blood pressure in her lungs, or secondary pulmonary hypertension.

The Franklin County family is trying to raise $75,000 before the end of September. Their thought is if many people donate a little bit, they could reach their goal.

Granted, it would take thousands of small donations, but the Tri-Cities is large enough that such a feat is possible.

When Mailia was a baby, doctors told her parents there was no way to repair the hole between her heart's left and right ventricle. Doctors said if she could stay alive long enough, perhaps technology would catch up and there would be a way to help their daughter.

Since then, she has survived with the help of an oxygen tank. She cannot exert herself at all, as she tires too easily. She doesn't know what it's like to walk more than a few steps.

Mailia is now 15, and it finally looks like a procedure has been developed that holds promise for her. Dr. Zannos Grekos, a Miami surgeon, has discovered a technique using adult stem cells that could help Mailia. He started using the cells to treat heart patients in 2006 and to treat lung patients about 18 months ago. In that time, he says he has successfully treated 20 to 30 patients with pulmonary hypertension.

The problem is that Grekos' technique is considered to be in the experimental stage and isn't covered by the Goforths' health insurance. And because it is so new, it can't be done legally in the United States, even though the doctor is a Miami surgeon.

If enough money is raised, Grekos would fly to the Dominican Republic with the Goforths to perform the procedure on Mailia.

She doesn't have any time to spare. When she saw her cardiologist in Portland in May, the Goforths were told the left side of her heart is collapsing, while the right side is enlarging.

The Goforths are desperate to help their daughter. After conducting extensive research, they believe Dr. Grekos has the answer.

We know a lot of folks are watching their pennies, but how often does the chance to be part of a miracle come along?

Donations can be made by going into any HAPO Community Credit Union and contributing to Mailia's Miracle fund. Information about other ways to donate is available at http://www.mailiasmiracle.com/.

Mailia has never had a normal life. If enough Tri-Citians pitch in -- even a small amount, she has a chance for one.

Tri City Herald News Story on Mailia's Miracle

Mailia's miracle: Family struggles to pay for teen's experimental surgery
By Michelle Dupler, Herald staff writer

Herald - Andrea Goforth ponders the future of her daughter Mailia, 15, left, who has pulmonary hypertension. Goforth and her husband Max are hoping to raise enough money to take Mailia to the Dominican Republic for an experimental stem cell procedure.

In a country house in Franklin County, surrounded by horse pastures, lives a sheltered young girl who talks to her parrot and animals and dreams of a normal life. But a cloud hangs over her, a curse cast at birth that could claim her life before her dreams are ever realized.

In a way, the story of 15-year-old Mailia Goforth is like a fairy tale — not the cheerful Disney versions full of song, but the darker ones told by the Brothers Grimm. Like Sleeping Beauty — who was sheltered by her parents from the danger of a simple prick from a spindle — Mailia has lived a secluded life, unable to attend school or even have many friends except those she’s found online. But for Mailia, the curse her parents are desperate to protect her from is a hole in the wall of her heart. And her parents have hope it can be lifted if they can find a way to pay the $75,000 fee.

Mailia Goforth suffers from Eisenmenger’s Syndrome, secondary pulmonary hypertension, or high blood pressure in her lungs. Her blood pressure is high because the hole in her heart allows too much blood to flow from her heart to her lungs, causing her blood vessels to constrict and stiffen and strain her heart. The high pressure also stops surgeons from closing the hole.
That in turn means not enough blood flows into her lungs and she becomes fatigued and short of breath.

She can’t walk more than a few steps without tiring. Her carriage is a motorized scooter with a basket on the front for her service dog and an oxygen tank on the back so she can breathe.
For seven months of the year, when temperatures are cool, she can’t venture outdoors because of the strain on her lungs and her susceptibility to viruses.

And time is running out for her. An examination by her cardiologist in Portland in May showed the left side of her heart is collapsing, while the right side is enlarging. A double-lung and heart transplant — the customary treatment for Mailia’s condition — is not an option, as doctors have told the family Mailia would not survive.

At this point in the tale, a wizard enters: Dr. Zannos Grekos, a Miami Cardiologist who has promised the hope of a cure derived from Mailia’s own blood.

Grekos has developed an experimental technique to repair pulmonary hypertension using adult stem cells. In fact, it’s so experimental it can’t legally be done in the United States because it isn’t approved by the Food and Drug Administration, so Grekos flies with patients to the Dominican Republic to perform the procedure. Because it is experimental, the cost of treatment is not covered by the family’s insurance.

Blood is drawn from the patient and flown to a lab in Israel where stem cells are extracted and activated with a protein known as a growth factor to cause them to multiply. Growth factors are produced normally in every person’s blood and tell other cells to become brain tissue, heart tissue or liver tissue, Grekos said. “We use ones that are specific in this instance for blood vessels,” he said.Every person also has stem cells running around in their body like miniature repairmen, and when they can be extracted, multiplied and told what to do, they can repair damaged blood vessels and even make new ones, he said.

The stem cells are flown and hand couriered from Israel to the Dominican Republic where Mailia would be waiting to have them inserted into her lungs through a small tube. The stem cells would attach to her pulmonary blood vessels and help them regenerate, Grekos said.
For Mailia, that would reduce her blood pressure, making it easier for her to breathe and allow surgeons to give her a pulmonary artery band, which would reduce the blood flow through the hole in her heart.

He said the idea came from research into using adult stem cells to build natural bypasses and improve circulation in patients with blocked arteries and poor leg circulation. “We took that information and applied it to patients that had poor circulation of the lungs,” he said. “We found we were able to reduce the pressures in patients after treatment.”

Grekos said he started using adult stem cells to treat heart patients in 2006, and began using the treatment for lung patients about 18 months ago. In that time, he’s successfully treated 20-30 patients with pulmonary hypertension. The procedure isn’t without controversy. Dr. Irving Weissman, a Stanford researcher and president of the International Society for Stem Cell Research, told CNN in July that Grekos’ work has no basis in medicine or science.

But Grekos countered that Weissman, as a researcher focused on use of embryonic stem cells, just doesn’t understand.

“He is not aware of all of the adult stem cell research,” Grekos said.

The Florida Department of Health shows Grekos has been licensed to practice medicine in the state since 1992 with no disciplinary actions on his record.

With no other realistic options for Mailia, Andrea and Max Goforth are putting their faith and trust in Grekos that he can give their daughter the normal life she craves.

“We have been told there is no hope, no cure, that her condition is very rare,” Andrea Goforth said. “I have faith and hope that technology has finally caught up.

Grekos said if the stem cell therapy is successful, Mailia’s pulmonary hypertension could be reduced enough that she could have a relatively normal life without requiring oxygen 24/7 and perhaps even be able to play sports.

Mailia(’s) has dreams both simple and lofty — she’d like to go to the mall like other teenagers and be able to swim like her idol, Michael Phelps. She also envisions one day running her own animal sanctuary in Costa Rica where she’d preserve endangered species.“I see myself without my oxygen just being free and happy,” Mailia said. “Being like a normal person, doing the sports I want to do especially baseball.”

But that will require her parents raising $75,000 for the treatment and the trek to the Dominican Republic. The Goforth’s are grateful and hoping to find the assistance to organize several events, such as a gala night at a local winery or a golf tournament, to raise the money.
The family also has set up a website called Mailia’s Miracle that tells Mailia’s story and gives information on how people can help and donate.

“It has been almost ingrained in us that this is what she needs,” she said. “We want her regenerated and healed. The reversal of this has the potential of her living to a ripe old age ... to actually really experience life physically with no holds barred. What we want is to see her happy, fulfilling her life’s purpose and to help other’s faced with similar circumstances.”

Donations can be made by going into any HAPO Community Credit Union and making a donation to Mailia’s Miracle fund. Information about other ways to donate is at http://www.mailiasmiracle.com/.

Monday, September 7, 2009

Mailia's Miracle Benefit Car Washes

Mailia's caregiver, Ramona Torres has planned several car washes recently to benefit Mailia's Miracle. Two of which were held recently at Roberto's Taco's in Kennewick and Jessie's Window Tinting in Pasco. We were able to raise $1,000.00!!!

We wish to thank everyone that helped from providing the location's to also Radio Station 97.9 La KeBuena in Pasco, and to DJ Eduardo for announcing and promoting the car wash at these locations. To Albert from our Hispanic newspaper Tu Decides...thank you for advertising the car wash and to the following volunteers and helpers and to all who donated, including the wonderful gentleman from Hermiston who came by with a truckload of beautiful watermelons and gave us some for our tireless helpers that day...all our gratitude and blessings!

The generosity you have demonstrated to our Mailia is truly humbling. Thank you: Ramona, Crystal, Checo, Marcie, Michael, Mirna, Erica, Marta, Pablo, Anthony, 5, Naomi, Hermina, Lauri, Kerina, Chena, Edwardo, Grandma Janet & Papa John and of course Tom!