As many of my friends know, I have Cerebral Palsy. It effects everything I do, except imagine. I imagine I can walk, I imagine I can talk, I imagine a future where I can communicate better with my friends and family. I want to make my dream a reality.
I have an appointment at the Stem Cell Institute in Panama City this spring. I just have to get there, and pay for the expensive treatment. We chose this place because they will use my cells, as well as donated umbilical cord stem cells, like they are currently using at Duke University.
This is my chance. I am an excellent candidate for this kind of therapy, even though it is not offered in the US. I know I can get there one step at a time, and any help you can offer will be greatly appreciated. God bless you for your generosity and prayers.
Our clinic: www.cellmedicine.com
From His Family:
Some of you may or may not know Eric's story, so I will tell it. On August 23, 1996, Eric was born, not breathing, in a small hospital in California. After a transfer to Stanford/UCSF, and a ten day stay in the Neonatal ICU, Eric was sent home with a dismal prognosis, only 30 days to live.
Every day was a challenge to get him to nurse, to get him to thrive. With God's grace we hit a turning point on the day of this Bris. Just minutes after his circumcision, he began to nurse vigorously. Eric began to thrive, but we still didn't really know what was going on. We knew he wasn't going to die within 30 days, Eric proved that! Something about consecrating your child to God, and then a miracle health turnaround occurs. What a blessing, but he still was not 100%; healthy yes, but no motor control, no speech.
Over time, we traveled to Florida to consult with neurology specialist; we enrolled him in Conductive Educational Therapy for two years and participated in many other therapies including muscle stim every night while he slept, and cold laser treatments to stimulated brain activity and healing. All of them worked with limited results. After one of our many visits to Shriner's Hospital in Salt Lake City for wheelchair modifications and special orthotic shoes, and an MRI, an official diagnosis was decided upon; Cerebral Palsy.
The MRI showed the places in Eric's brain that were damaged from his loss of oxygen at birth. This brain damage causes nerve impulses from his brain to get confused and lost on their way to his limbs. So even if he thinks, "move my right arm up," the message gets garbled in his brain and his arm just waves around.
Right now Eric's quality of life is totally dependent upon technology and others. He needs caregivers to feed, toilet, bathe, dress and move him. He needs expensive technology just to communicate with others. He has extreme difficulty eating and drinking and meals, easily take over an hour at a time. He requires care 24 hours a day, and caregivers who can lift him - all 80 pounds. As he grows, his needs will remain the same, only his weight will increase and taking care of him will become even more demanding.
Also, Eric is quite bright, he knows what is going on, he knows his limitations and wants to get better and do what all of the other 15 year olds are doing. He chose this!
Eric also requires 24/7 care to ensure that he doesn't choke or unintentionally bang his hand into something. Once, while attempting to scratch an itchy eye, he accidentally put his finger in his own eye and tore his cornea. It took us a couple of hours to figure out what was wrong, because he couldn't tell us. We had to keep guessing and checking until we figured it out. He could not tell anyone the pain he was in.
Could you imagine not even being able to scratch an itch you had anywhere on your body. Pretend that you needed to be fed every morsel of food you have ever eaten, or given liquid from someone else for your entire life. In the middle of the night, if Eric is thirsty or has to go to the bathroom, he has to call out for help; he cannot just take care of his own simple needs by himself.
As parents, we have left no stone unturned in finding ways to help Eric. He still receives physical therapy, and a special diet to maximize his health and energy, but that is not enough.
Our best hope is stem cell therapy. Stem cells are in everyone, and through their ability to travel to an injured spot on the body are able to begin the healing process. The problem is that all of the stem cell therapies available in the USA are primarily for cancer and orthopedic problems. Currently, there are studies going on at Duke University on the affect of Umbilical Stem Cells on Cerebral Palsy in children. Eric cannot participate because he is too old for the study and didn't bank his own cells at birth - who knew? Because of the limits being put on stem cells by the FDA, this kind of treatment is not available to Eric here, and we need it now.
The good news is that at a clinic in Panama City, Panama, they are doing autologous and umbilical cord stem cell transplants every day. No Embryonic Cells are used. The treatment recommended for Eric lasts two weeks. He will donate his own cells- like a bone marrow donor, and then have them, plus donated umbilical cord cells, transplanted into his body.
This will be an arduous trip for the family, because wheelchairs and airplanes don't really mix. And it is impossible to bring all of his special toileting and bath equipment with us.
It is not easy for us to ask for help. Over the years we have met his needs from expensive equipment and computers to extensive therapy bills that insurance wouldn't pay for. We have juggled work schedules, enlisted his little brother to help, and provided for Eric.
This trip to Panama holds hope that the stem cells will help heal Eric's brain damage and improve his quality of life. The clinic reports that up to 80% of their clients show some improvement. For Eric this means that he may sit up better, or support his weight better, helping with wheelchair transfers. He may drool less and gain more oral motor control. He may be able to sratch an itch. He may be 100% healed.
We don't know but we have to try. Any small improvement would mean big gains for Eric. What if he could drink from a straw? What if he could ask for something without his computer device? What if he could tell someone he was in pain in order to get aid quickly?
These are our dreams for Eric, and with your help, maybe this will be the answer. If you have any questions, please contact us. One way or another we are going, and we are going to give Eric all the help we can.
Thank you for reading this story.
Blessings to you,
Lee, Elizabeth, Eric and David
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