Fight For Sight: Family in Hopes of a Medical Miracle

October 28, 2007
Fight for Sight: Family in Hopes of a Medical Miracle



Standard DemocratEAST PRAIRIE — Every night before she falls asleep, Paige Archie dreams about the time her son will see her for the first time.“I wonder what he’ll do when he sees me,” she said. “The thought goes through my head all the time.”Her son Daegan, 4, was born blind. Eye doctors say his optic nerves didn’t fully develop. “They don’t know what causes it,” Archie said.Archie said she had a normal pregnancy, although she had some difficulty with labor. Daegan weighed 8 pounds, 13 ounces when he was born and was “just as normal as could be.”But once he was about 3 months old, family members began to notice things they thought were odd. “He wouldn’t reach for a rattle, he didn’t care for looking at anybody,” Archie said. And his eyes would “jump back and forth.” It was her grandfather, Richard Sutton, who finally convinced the Archies to take Daegan to the doctor. “I kept watching and he didn’t have the movement,” Sutton said. “He wouldn’t follow you around or anything.”Doctors told the Archies the only way to make Daegan see is to transplant or regenerate nerves — something they weren’t able to do.But now the Archies have hope. A couple of months ago, Paige Archie saw a newspaper article about a 6-year-old from Webb City who was also born blind. However, the girl had developed 20/400 vision after receiving an umbilical “corded-blood” stem-cell treatment in China.“I thought ‘that’s hope for Daegan right there,’” Archie said.Soon after she saw the article, Archie found a Web site and contact information from the other family and spoke with that girl’s mother.“I was so excited when I got off the phone,” Archie said. “It didn’t feel real.” They talked to Daegan’s doctors, who called him “a perfect candidate” for the injections. The only problem is that the process is expensive — and it isn’t covered by insurance, since it is considered research.Between the cost of the injections, travel, expenses the family will incur the 30 days they are in China and the therapy Daegan will require once he returns home, the total tab will be about $60,000.So now, with help from the community, the family is working to raise that money. Archie hopes to leave for China near the beginning of June.“Everybody’s been pulling for this child,” said Loretta Peters, Daegan’s great- grandmother. There have been yard sales, T-shirt sales and road blocks, and about $5,800 has been raised in just three weeks. Organizations are planning other events, such as a fish fry, and a golf tournament is in the works for next spring.Richard and Judy Sutton, Daegan's great-grandparents, said they’ve been overwhelmed by the response.“It’s a surprise that in that length of time we’ve been able to raise that much,” Judy Sutton said.Richard Sutton said he has had several friends say they plan to donate when they see just how much is needed. “It would mean the world to me if he could just see enough to just walk around,” he said.People are being proactive with the cause. “We’ve even had businesses call and say ‘bring a jar’ for donations,” Peters said.Even Daegan’s brother Jase, 3, has a jar — dubbed his “China Money” — where he collects coins. “We didn’t want him to feel left out,” Archie said. And for those who can’t donate, support and prayers are just as appreciated. “You don’t have to donate a dollar,” Archie said. “We need prayers, too.”She was afraid the town may not be supportive since stem cells can be a sensitive issue. But, Archie said, she hasn’t faced any criticism.She and other family members have made it clear the injections don’t deal with aborted fetuses, but umbilical cords — in fact, Jase’s umbilical cord was banked in case it can be used. They also give out the Web site, www.stemcellschina.com, so people can research it themselves.“We’re just looking forward to the day we can send him to China,” said his grandmother, June Maxey.No one knows what the injections will mean for Daegan. “They don’t like to give odds,” Archie said.But she’s hoping for something, no matter how small. “It might not be perfect, but if he could see my face, that’s all that matters,” Archie said. “If this can give him a chance, we need to give him that chance,” Peters agreed.Even so, the family is making plans to help better Daegan’s future if the injections don’t give enough improvement.“We’re planning to move to St. Louis so he can go to the Missouri School for the Blind,” Archie said.While it will provide Daegan with an education, he’ll also learn important life skills. “They’ll teach him how to be independent, too,” she said.But family members hope the injections give Daegan enough vision he doesn’t have to go there, and perhaps be home schooled instead.“In the back of our minds, we hope for more, like for him to go to regular school,” Maxey said. “We’re all really close and we don’t want to see him move away.”

Benifit to Help Toddler's Recovery

October 26, 2007
Benefit to Help Fund Toddler's Recovery



Sun-herald.comPORT CHARLOTTE -- Cameron Petersen's sight continues to improve, but his family still needs help.The Loyal Order Moose Lodge 2121 and Fraternal Order of Eagles will hold a charity fundraiser Saturday to benefit Cameron. The event will take place from 11 a.m. to 2 p.m. at the Moose Lodge on Loveland Boulevard.The 21-month-old Port Charlotte toddler suffers from optic nerve hypoplasia, a leading cause of blindness in children. The condition causes underdevelopment of the optic nerve and can lead to permanent blindness.Doctors told Cameron's parents nothing could be done.The family began to research other options and found Stem Cells China, a research facility that has infused stem cells into patients with numerous disabilities and diseases.Cameron traveled to China in August as part of a case study to treat his blindness with stem cells. The procedure transplanted harvested umbilical-cord stem cells into Cameron. It consisted of four stem-cell infusions to Cameron's arm and the lumbar region of his spine.By the third treatment, Cameron was standing on his own and crawling toward objects -- tasks he couldn't do before. Now, doctors say he can see to his knees.The family needs assistance with medical expenses, including a hyperbaric oxygen decompression unit to help Cameron's vision improve.Cameron's grandmother, Carol Petersen, will also hold an event at Gilchrist Park Nov. 3 to raise awareness about umbilical stem-cell research. Petersen has been collecting signatures since September to start a government-funded cord blood bank.For more information about Cameron's story or to sign a petition, visit www.cameronsmiracleofsight.com. Donations may also be made to the "Cameron Lee Petersen Trust" at any Bank of America.

Where is the Miracle Here?

Had you asked me even just one year ago if I ever thought my name would end up in The Enquirer linked with the word “miracle” I would of course said “certainly not”. In fact I am not a reader of this type of thing as I do not follow such matters in life as one would typically find in such a news paper. Thus upon receiving a phone call several weeks ago from one of my mom’s telling me that she had been contacted by a reporter claiming to be from the National Enquirer came as a bit of a shock to us both. Her daughter has been receiving a lot of press in recent months as her story has spread across the globe, but little Miss Rylea at the age of 6 is by no means a Hollywood star. She is however an example of one of life’s miracles but the real question should perhaps be what is the true miracle taking place here?
Several months ago her mother sent in a very simple question through our web site general’s general “contact us” section. At the time I do not think Dawn really expected any sort of reply but perhaps a standard “no”. Her question was so simple, honest and earnest. She only was wanting to know if I could help her 5 year old daughter who had been totally blind since birth to see. She has since told me that she has been asking that very same question of numerous medical professionals since the moment she found out her newborn baby girl was blind. No one had ever given her even a ray of hopeful light over the years but Dawn just kept asking as she is not one to accept fate as being predetermined. Then she stumbled upon me and I upon her. I understood her instantly as only a mother placed in a similar situation could. No medical professional, clinician or scientist could have known immediately what I knew about this mother and her child unless they also had been placed to walk in such shoes.
She sent her question off to a company in China, half way across the world only to have it sent back to a woman that lived only a day’s drive away. After several email and phone conversations with Dawn to determine exactly what her child’s status was I set about my work. My task was a simple one on its face; could the type of stem cells used by my company be used to treat an underdeveloped optic nerve. It did not take me long to figure out that it had never before been done, there were no studies, no research not even one single medical paper on the subject. All I found was a whole lot of nothing. That however did not stop my mind from turning over the possibilities.
All it meant for me was that I had to make all the connections in my own mind starting from a blank page. Nothing in my research gave any indication that Rylea’s situation of having been diagnosised with Optic Nerve Hypoplasia could be treated. Everything I read said that it could not be treated but knowing what I knew about stem cells told me that what I was reading was in fact so out of date with today’s technology that it was simply wrong. The more I thought about it the more absurd the notion of ONH being untreatable became. Following a path of logical progression in my naturally analytical mind I became convinced that in fact it could be done and who better to step forward and do it than I. Why not me? Who would do it if I did not? Would it ever be done if I did not? Should I just let this go on its predetermined pathway or should I step in and change this child’s fate? Who is that decides our fates anyway if not us? Perhaps in fact I was Rylea’s fate and she mine. Now her fate and life has been forever altered. She and I will be linked together in this time and place forever henceforth.
It is not so much that the restoration of Rylea’s vision is the miracle but rather it was the connection of her and I that was the miracle. For me to have come to this place in life I would not have guessed it would be so even just one year ago yet here I am. I was guided into Rylea’s life and she into mine that is the miracle not told by the Enquirer’s reporter. It is the story behind the many headlines that have taken both Rylea and I out of our space of privacy and thrust us into such places as the National Enquirer. I wonder what she will think 20 years from now about her moment of fame.
What I think about it all is that behind the headlines is a story that no one has told.

It is the story of why our paths crossed, how it was that I ended up in a place by which I could help this child and who it was that put me here. There is one tiny soul responsible for all of this and had it not been for his life and yes even his death Rylea would still be blind. It is not Rylea who is the miracle, it is not the doctors who worked with her that are the miracle, and it is not even me who brought it all together who is the miracle. The true miracle here is a life that existed before and the soul that continues on with such beauty and perfection that it can only be seen as angelic. It is this one that wove the movements of fate and time together with such a simple complexity that it becomes almost unseen. It is he who locked together the bits and pieces of our lost lives to create the whole of a true miracle. It is for whom I shall forever love. Such beauty, such perfection is he. Clearly the miracle is he my Justin Lee.

Who To Trust?

Do you ever wonder about what goes on within the world of stem cells? For the vast majority it is a strange and confusing area of science that seems impossible to navigate. You can surf the Internet, watch the programs on TV, some folks will pick up a book on the subject but for most they never get past articles written up in their local newspapers.

Books on the subject are actually few; they are typically not geared for the lay person and often very expensive. Written articles in the newspapers tend to be misleading and are often filled with inaccuracies not to mention inflammatory phrases designed to catch and keep the readers attention. Television can peak one's interest with powerful sound bites and fascinating tales but typically do not have enough content to educate. That leaves us with the Internet.

These days' stories, web sites, articles and blogs of varied nature are spread throughout those invisible connections. You can find a host of varied information about stem cells on the Internet. The problem is without some basic knowledge of both science and medicine how are you to understand what you are reading. For most there is no way to separate the facts from the fiction, the good and true from the misleading and often disreputable. What is a person to do? Who do they trust to give them honest information in a world filled with scam artists who would take advantage of the seekers at every turn?

Well here I am and this is what I do. I am the person often trusted by parents, the injured, the sick, the families and friends of those in need. They come to me every single day with hope and fear. Their pleas come across my lap top screen on an hourly basis. All of them vulnerable with pain, loss, desperation and hope. Yet how are they to know who I really am as after all to most I am just a name with an email address that comes through the darkened space of an Internet connection. If I were in their shoes would I trust me?

Well the honest answer is vague, it is only a "perhaps" I suppose. For those in need they must trust someone in order to find help but deciding who is the most difficult part of navigating the stem cell world. I work with literally hundreds of patients, parents, family members and loved one's all in need and each one searching.

It is not surprising that the vast majority of my clients come to me by personal referrals. After three going on four years working with families and patients I have gained a reputation. My name, an unusual and not so forgettable one is spread all over the Internet these days. It can be found in chat groups, Internet support groups, blogs and news reports. Yet still despite that I often ponder how hard it must be for some to trust me. I am after all nothing more than a stranger to them.

An experience with a recent client of mine has left me turning this subject over and over in my head. She is a mother of three the newest child being less than two weeks old when she first contacted me. For her there was no personal referral just an Internet site. She came to me by surfing the net in exhausted desperation looking for help as all are when they finally make their way to me. Her tiny newborn son had just come home from the hospital after living through a ruptured umbilical cord during birth resulting in the loss of over 50% of his blood volume. This event left the newborn struggling for life and labeled with a most uncertain outcome.

How does a mother consumed with ripping pain and endless desperation find a safe, viable treatment for her 2 week old infant son who has struggled for life only to be left with a grave diagnosis and a certain brain injury. Late at night, numb with agony she surfs the net. Moving the mouse, repetitive clicks and several key strokes later she has entered into the strange world of stem cells. One more movement sliding the cursor across the computer screen and just one more quick click she finds herself at a website. http://www.stemcellschina.com/ . After pouring through the many sections, countless articles, stories and patient blogs she follows the path to "contact us". She types in a brief note asking for help.

In less than 24 hours she is conversing with me. Numerous emails go back and forth between her and I, multiple phone calls are made across the globe and in just a few days time she is buying tickets, obtaining emergency passports and getting Visa's all done to take her infant to China for stem cell treatment. Within just 8 days of that simple click to "contact us" she and her husband are boarding a plane with their now three week old son.

How did this happen? Where was the evolution of trust? How did she know I was the one? For most I think it is a sense. That untouchable feeling we have inside. I have asked her why she placed her faith in me and she simply states "I just knew I was lead to you".

I suppose in the end for most trusting someone over the Internet to help you travel half way around the world to receive stem cells is nothing more and nothing less than an inherent faith and endless hope. That said I still wonder if there isn't a better way. Late at night while lying in my bed waiting for sleep to overcome me I frequently find myself reflecting in the quiet darkness of my clients. Often I am wondering if my clients are doing the same of me. Do they wonder who I am and what I am like? I think they must. It is thus that after months of contemplation I have finally begun this blog. It is a look into my life, my work and my heart. Please enjoy...

The photo above is little Liam. It was taken in the NICU of Xiashan Hospital in Hang Zhou, China. Here at just the tender age of one month he was the youngest child to ever receive a stem cell transfusion. The cells were given via an intravenous transfusion. The line was placed into one of his scalp veins as they are larger, easier to access, safer and less likely to infiltrate during the infusion. The procedure was done in the Neonatal Intensive Care Unit due to his young age and to allow for extremely careful and watchful monitoring. You can see in the tiny bed with him is an infusion machine used to carefully, slowly and at a very steady rate infuse the amber colored solution of cells and growth factors into his tiny body.

The photo was taken by one of the registered nurses working in the NICU with Liam that day of August, 2007.

Liam's Mother Liz talks about her evolution of trust.

July 27, 2007 was one of the best days of my life. It was also the worst day of my life. It was the day my son Liam Michael was born. Such a paradox. My husband Steve and I sat in the hospital room listening to the fetal monitor, taking pictures and laughing…….we were going to have a baby. Our 3rd and most likely last child was on its way into the world. We didn’t know the sex but I was convinced it was a boy…mothers intuition. My pregnancy had been fairly uneventful except for a very strong, inexplicable feeling throughout that something was “just not right”. I was so convinced that I had even expressed my concern to my OBGYN a few weeks before my due date. My specific concern….the umbilical cord. I dismissed my fears as hormonally induced insanity. Little did I know that my fears were valid….mothers intuition. Due to an undiagnosed condition called Vasa Previa, Liam lost over 50% of his blood when my water broke. It took more than 13 minutes to revive him. His apgar was 0 0 0 2 3. He received 2 blood transfusions and began having seizures. The outlook was grim. This couldn’t be happening.

After a week in the hospital, Liam came home to us. With a calendar full of appointments and evaluations, all the doctors could tell us was, “you just have to wait and hope for the best”. That was just not good enough for me. Over the next few weeks, it became apparent that Liam was not a typical newborn. Surely there must be something that I could do! I had to help my baby.

I began my search, voraciously reading every article and bit of information I could about brain injury. I stumbled upon some articles on the successful use of stem cells in treating brain injury. Surfing the internet late into the night I began learning about various places throughout the world where stem cell therapy was available. My search eventually led me to a website about a program in China. I shot off an e-mail requesting more information fully knowing I was never going to take a newborn baby around the world to China for stem cell therapy, there were places much closer I could go, but I wanted as much information as I could get my hands on.

The reply came quickly. It was from Kirshner Ross-Vaden. She explained that she knew how I felt, and that she too was once where I was. Finally, someone who knew how I was feeling. I called her the next day. We talked about many things including the Beike stem cell program in China. I told her that 3 weeks in China with a newborn baby was just not feasible for me or my family. The very thought of it scared me to death. My research and discussions with Kirshner made me feel confident that umbilical stem cells were safe. But to go to China to do this? I was 3 weeks post partum after an emergency C Section, my newborn son was fragile and brain injured, I had 2 other children at home. I couldn’t possibly go to China for an experimental treatment that offered no guarantees. Perhaps it was Kirshners contagious enthusiasm and belief in the therapy, or the bond we shared because she was a parent of a brain injured child or probably a compilation of many things, but I felt I could trust her. She told me she would give anything to have had the opportunity to take her precious son Justin for stem cell therapy at such an early age. I believed her. She told me “you can do this”. Such a simple phrase but very empowering to me at the time. She truly cared. My gut told me this was the right thing to do….I had ignored my intuition once, and I was not going to do it again. My husband and I decided to take Liam to China for Umbilical Stem Cell Treatment. It was the hardest decision I have ever made.

Once we reached the hospital my fears slowly began to melt away with each passing day. The staff was very caring and were very careful with Liam. He received a total of 4 IV stem cell infusions over a period of 3 weeks.

Liam is now almost 3 months old. He is doing very well. People are amazed at his progress. I am extremely grateful that I came to know Kirshner. If someone else was on the other end of that e-mail, I don’t think I would have made the trip. I do not believe in coincidences. I was led to Kirshner for a reason. She has been an invaluable resource to me as I have been trying to navigate this lonely road of having a brain injured child. I can only imagine the pain of losing a child, and I admire Kirshner for taking her personal pain and loss and turning it into something positive for so many desperate families. I can only say thank you to her and her angel Justin. For without them both, I would probably be still surfing the web paralyzed with pain, trying to help my son.

The future is far from certain for Liam and because of his age many will argue that there is no way for me to know if the stem cells really helped them. I absolutely know they did. How? Mother’s intuition……..

Thank you Kirshner.

In the beginning

In the beginning

It was he who choose me.

His was my tiny baby Lee.

He was all not just part of me.

I now live all within and for he.

His spirit spins so fast within me.

With a soul now far beyond thee.

He came with injury yet perfect to me.

Jay Lee soul perfection to me and to thee.

Auction Helps Family with Trip and Treatment Costs

Auction Helps Family With Trip and Treatment Costs

WBKOA Bowling Green family is preparing for a trip to China in the next week in hopes that treatment will help their son regain his sight.Ten-month-old Jackson Blackford was born with optic nerve hypoplasia.The condition left him legally blind.Jackson is one of five children worldwide selected for a research study using umbilical cord stem cells.An auction was held on Oct. 6 at American Legion Post 23 in Bowling Green to help raise money for Jackson's trip to China and treatment, which cost $60,000."They've done three of the five children so far. Jackson will be the fourth one and so far all three children have gained some vision from this treatment so we're real hopeful for it," assured Jackson's mother, Rachael Stayer.Jackson and his parents leave on Oct. 15 to go to China.

Community Plans Fundraisers to Help BG Infant

Community Plans Fund Raisers to Help BG Infant's Family Pay Health Expenses



BG Daily NewsVarious organizations will have fundraisers for Bowling Green infant Jackson Blackford, who will soon travel to China to participate in a case study to see if his sight can be restored.Jackson has optic nerve hypoplasia, an underdevelopment of the optic nerve. The study will involve using a transplant of healthy donated umbilical cord stem cells at Beike Bay Stem Cells China. The trip will cost $60,000 for Jackson and his parents, Rachel Stayer and Tommy Blackford - including travel costs, living expenses, treatment and rehabilitation, Stayer said.Fundraisers will include the following:Greenwood High School and Choir will have a special benefit concert at 6 p.m. Tuesday at First Baptist Church. Tickets are $8 for adults and $4 for ages 12 and under.An auction of donated items from various individuals and businesses, including Eagle Industries, Ashley, Steamboat Salvage, Haverty’s, will take place from 1 p.m. to 5 p.m. Saturday at American Legion Post 23 at 208 Dishman Lane.A special showing of the movie “Ray” will take place at 7 p.m. Oct. 8 at Western Kentucky University’s Mass Media Technology Hall. Dr. Ron Milliman will host the event and donations will be taken for Jackson.Donations can be made to the Jackson T. Blackford Donation Fund at any branch of U.S. Bank.