Mailia at Regenocyte May 2010
Today...the 10th of October, we set out to see Mailia's Dr. Nazar, her wonderful GP who has followed her care for the past 10 years now. We were instructed by the folks at Regenocyte that Mailia needed to have some pre op blood work done prior to our trip to Florida and the D.R. so off to Dr. Nazar she goes, straight in to the phelbotomists lab this morning to do, exactly that. Oops, did I spill the beans or fail to mention that YES!...Mailia has a date with her hero, her favorite Cardiologist and Stem Cell doc and his wonderful staff in Florida THIS MONTH!!!!
One evening last month...we recieved a phone call from Dr. Zannos Grekos telling us it was time that Mailia be treated with another round of stem cells and that we should start planning this as soon as possible. Nancy Trombino, who is Regenocyte's Director of Patient Services, arranged Mailia's procedures to coincide with the following dates:
Oct. 24th...Blood Draw at Regenocyte in Bonita Springs, Florida
Nov. 1st...Adult Stem Cell Transplant at Regenocyte in Santo Domingo, Dominican Republic
One thing Dr. Grekos mentioned to us is that this next procedure being done on Mailia would go a little differently. It was his hope...that Mailia's next blood draw would be able to produce a more viable amount of stem cells, meaning instead of the 58,000 million stem cells delivered during her procedure in 2010, this year he wanted to see closer to 100,000 million stem cells produced from the lab in TelAviv Israel....almost double the amount of heart and lung adult stem cells!
It was also his wish to see the second half of the procedure, go a little differently than the last one. Dr. Grekos wants to use a balloon catheter to hold the stem cells in place, long enough for them to actually "stick" and adhere well to the delicate walls of Mailia's lung vasculature. The benefits of being able to do this now...this time around far out weigh the risks involved last time, for you see...Mailia's lung pressures were so very high last year and she was so very fragile, there was no way to do this then, for they would have lost her on the table.
Now...Dr. Grekos believes with her 30% improvement from last year...she should be able to handle this well and come away with some huge gains...or let me rephrase that...better numbers where it concerns her pulmonary vascular resistance.
He did, however...ask that we consider doing something before hand...to better prepare Mailia for another successful outcome. I asked what that was...and to my amazement, he said the following: I have a patient who is paraplegic from a spinal cord injury that I am treating with his Adult Stem Cells. The patients mother and father are physical therapists and I would like for you to contact them and discuss what they are doing for their son. The name of their organization is the Power of Breath dot org. You can google it if you like and go from there but I really do think it would improve Mailia's overall results.
I thanked Dr. Grekos profusely and came away from this phone conversation so elated and happy for our precious Mailia and GRATEFUL...oh how thankful we are to everyone who has helped us and are continuing to help in so many ways.
My last day of work due to completing our proposal and my contract...at my present job would be September 30th, which is something I have no control over but see it as...perfect timing so as to give us 3 weeks to get Mailia ready for this huge trip. We are still short on our funding for Mailia's procedures...no matter, we will figure it out...and TRUST and have FAITH in God and the universe, it will all work out, and we will continue steadfast to work as a team to get Mailia her Miracle. We HAVE to! So please everyone...we humbly ask...once more for your prayers and any contributions or creative resources on your part to make this Miracle happen for Mailia.
Thank you...all our love and gratitude now, and always.
Monday, October 10, 2011
Sunday, October 9, 2011
Mailia Meets Bret Michaels and dreams of being part of the "Something To Believe In" charity reality show.
Mailia & Bret Michaels Aug. 24, 2011
Well wouldn't you know it. After teasing Mailia's dad Max about what an absurd idea it would be to ever wish let alone believe that a meeting between that infamous rock star from the Poison days, Bret Michaels, would ever materialize...I am here to tell you it was WORTH...believing in.
I will always remember Max coming in to tell me...this, is who you need to get a hold of to help Mailia...as he hands me a piece of paper with Bret Michaels name written on it. Who is Bret Michaels?...I asked...as Max just rolled his eyes, knowing I never cared nor listened to his music (sorry BM fans...but that is a fact).
Max told me he had just won the Celebrity Apprentice show (another one I did not watch obviously)...as most of my spare time is glued to the computer and internet looking for therapies and treatments for Eisenmenger's and pulmonary hypertension i.e. Adult Stem Cell Therapy and at time, we were so wrapped up with Mailia's first stem cell treatment and trip and raising the necessary funds to facilitate it all.
No...I thought to myself...well, if he is who you know him to be...then try to contact him Max.
Not...at least for the time being.
Spring ahead to March 2011 while perusing through our local news paper, the Tri-City Herald I happened to see who the concert line up is for our local small town/city Benton Franklin county Fair and Rodeo...and when I saw that Bret Michaels was included...my jaw hit the floor!
It's a sign...it's a sign! I remember orating to myself and Mailia...and quickly contacted Max to let him know. Max spent the next several months trying to figure out an opportunity where Mailia could actually meet Bret Michaels. He wrote letters to the BM fan club, to his publicists and road Manager, who we heard...had graduated from Kennewick high school.
But during this time, we also found out that Bret had been diagnosed with a hole in his heart, a PFO or patent foramen ovale that was a possible cause of stokes he had experienced early on. Unlike Mailia's heart defect or hole in her heart (VSD), doctor's were able to repair Bret's heart defect with a right heart cath and PFO closure device.
A true Miracle...and now with this added caveat and circumstance that hit sooo close to home, we knew in our hearts that Bret and Mialia...were destined to meet and connect in some meaningful and heartfelt way.
The day of the fair and concert came, August 24th 2011 and Max took the day off work...and left the house early to find a way so Mailia could meet Bret Michaels. He spent the entire hot and sweltering day combing through the entire fairgrounds...a paparazzi troll if you will, asking and inquiring until he landed at the Bret Michaels concert booth. After talking to several of the Bret Michaels staff setting up for the pending concert, and a 1-1/2 hour waiting period, Max was finally told that Mailia could have a meet and greet with Bret prior to the concert. Max immediately called home to tell us that his baby girl was going to get her wish.
I loaded up Mailia and her little service dog SteelDust and we headed for the fair late that afternoon and found her dad harboring a wrist band for her. Came time for the meet and greet, Mailia and Max were whisked back stage behind so much security and secrecy where Mailia got to say hello to Bret, shake his hand and have her picture taken with him. His band members and staff were all over little SteelDust...and Max, so humbled and grateful to them all...handed Bret an envelope with a letter he had written with one of Mailia's cards that said the following:
Dear Mr. Michaels,Let me begin by saying congratulations on your successful heart surgery and for remaining to be a positive role model in lieu of your other recent health challenges. I have been a fan of your music since the Poisonous 80’s. Having recently watched you on Celebrity Apprentice, Barrett Jackson, and other media outlets, I have gained a tremendous amount of respect for you as an individual, entrepreneur, philanthropist, and most importantly a DAD. The way that you responded to the news of your daughter’s diagnosis of Juvenile Diabetes, on Celebrity Apprentice, was very commendable. Like they say “Any man can be a father but it takes a special man to be a DAD”.
My name is Max Goforth and I live on a small farm in Pasco, Washington with my wife Andrea and daughter Mailia. My wife and I work full time day jobs and we also breed horses and dogs in our spare time. Our 17 year old daughter Mailia , like you, was also born with a hole in her heart that went undiagnosed until she was 3 ½ years of age. Mailia developed secondary pulmonary hypertension due to the large hole in her heart, or Eisenmenger’s Syndrome, and has required supplemental oxygen 24/7 for the past 14 years. Until recently Mailia’s prognosis was not good, as the traditional treatment protocols have had no noticeable benefit and Mailia’s pulmonary pressures are too high to safely close the hole.
Mailia is a beautiful 17 year old with a strong desire to live life to its fullest. She amazes her mother and I everyday with her positive outlook and we are extremely blessed to be her parents. We made a trip last summer to Florida and then to the Dominican Republic where Mailia underwent a controversial Adult Stem Cell Transplant that has shown very positive results. This technology is currently the only viable option that Mailia and some other Eisenmenger’s patients have to live long and prosperous lives. We are in the process of planning another similar trip in the near future to allow Mailia to have a second stem cell procedure. You can view Mailia’s story and the chronicles of our whirlwind trip at www.MailiasMiracle.com.
When I heard about your own heart condition and successful surgery, I told my wife, it sure would be cool if Mailia had the chance to meet Bret Michaels someday. Just two unique individuals bound by a common challenge.
As fate would have it, I see based on your current concert schedule that you will be performing live at the Benton/Franklin County Fair on August 24, 2011. This happens to be the County Fair for the area of Southeastern Washington where we live. We would consider it an honor and a pleasure if you could spare a few moments of your time while you are here in Kennewick, Washington to meet with us and Mailia. You would make the proud parents of an amazing 17 year old very happy.
The meeting that coincided with Bret's concert was amazing. Hearing his song, Something To Believe In was heartfelt. The next day...while googling the lyrics to the song, I found out that Bret is working on another reality show with Donald Trump called non other than "Something To Believe In"...a show based on "Charity" and Bret's intention of traveling the country helping those in need of a miracle.
Well...if FAITH and TRUST have anything to do with it...and taking Bret's last sentence or words said to Max and Mailia (to heart)..."I will talk to you later"...I think, Mailia has a very good chance indeed, of being a part of Bret Michaels circle...once again. And who knows, maybe a special "angel" will intercede and open a wonderful door so this will come to pass.
Please everyone...keep Mailia in your on going prayers that she will be healed and have her miracle. Thank you Max...you are an awesome dad and husband. We will never forget this sweetie...you are the best and YOU ROCK too!~
Mailia, Max and Bret Michaels....