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The story of Jacob….

  My name is Peggy; I am the proud Momma of Jacob Lester. Jacob was born at 31 weeks. He was on a respirator for 9 days in the NICU at Christ Hospital in Oak Lawn. I remember looking down at him being so tiny and pink, not being able to hold him because of the wires and tubes. After the first week I was finally able to hold him. On the 10^th day, Jacob graduated to the intermediate Nursery.   My husband and I were able to hold him, change him and feed him.  Jacob continued to thrive and was discharged 2 weeks later. He was able to come home without any medications or oxygen. As far as we were concerned Jacob left the hospital with a clean bill of health.

 

 Four months later, Jacob was scheduled for his post NICU follow-up. Much to my surprise the Doctor noticed delay in his development. He requested that Jacob have a head ultrasound. The results showed Cystic Encephalomalacia; which is the softening of the white matter due to cysts around the ventricles of the brain.

The doctor explained to us that this happens when there is a loss of oxygen either during the pregnancy or during childbirth. I was mortified!! Thoughts started racing through my mind; “Why didn’t the Dr.’s at Christ find this”?  “Why didn’t they see this when they did the ultrasound and scans before he came home”?...    Jacob was sent to see a Pediatric Neurologist; he explained the possibilities of the future for Jacob; delays in motor, speech,  and vision; Cerebral Palsy…*Gasp* and then he went on to say that Jacob would not be able to show any emotions. My heart sank…I tried to keep my composure, I was breaking down inside.

    What next? I contacted the Early Intervention Program to have Jacob assessed for therapy. Three people came into my house and examined Jacob. After a brief meeting, they determined that he did not need any therapy and that they would check back in 6 months. I was flabbergasted. I knew that he would need some type of Physical therapy. My Mother in Law had a friend who knew someone who was the Director of pediatric therapy at a nearby hospital; she agreed to meet with us. The minute she took Jacob from me she could tell that he had some tightness. She made a phone call and got us an appointment at Kids in Motion in Crestwood.

    Finally!! Some good news. Jacob has been going to Kids in Motion since he was 5 months old. He is now 5!! I am so thankful for Jacob’s therapists. Each and every one of them holds a special place in my heart.

Jacob also was diagnosed with a seizure disorder; his seizures have been under control for several months.

     During the last couple of months in 2007 I started searching the internet for alternative therapies for children with CP. I found several groups on Yahoo that supported children with brain damage. I signed up immediately. I wanted to read about other families who were going through the same things as my family was. I started to read about families who were flying to China for Umbilical stem cell therapy. I was shocked at the number of people in the US who were flying overseas for this treatment. I read and read and read and read…for months I became obsessed with the stem cell treatment.

The funny thing about all of the stem cell drama is that it’s not true what the Government is telling us. Embryos do not need to be used for the treatment of many diseases; stem cells can be obtained from the umbilical cord of a healthy child. I knew in my heart that Jacob would be a candidate for this treatment.     

          We started the process right away. We told friends and family about the decision we made; many of the family were not happy, but, once they actually listened to me explain and read all of the information that I had, most of them had changed their minds.  My husband and I set up fundraisers; everything fell into place. We started the Give Jacob a Chance Benefit fund. We raised enough money for my family of 4 to travel to China for 30 days. Jacob received 5 stem cell injections. He received intense physical therapy twice a day, 5 days a week. China was an AWESOME experience. The doctors, nurses and the hospital staff were fantastic; very caring and efficient.

Jacob has made huge strides since his treatments. Jacob is truly a blessing to my family. He is a strong, adorable and happy child who has been fighting since the day he came to this world. Jacob has made an impact on every person that he comes in contact with…I am so proud of my son. To read more about Jacob, please visit his webpage at: www.caringbridge.org/jacobralphson

 Just a few questions for Peg:

Stem Cell Therapy is currently a largely controversial topic in the US. Why did you choose this for your son Jacob?

*I chose to have the procedure done after months of research.  Most people only knew what the media was feeding them. I took the time to research clinical studies, patient experiences and other families success stories. Of course there were many articles written by Doctors stating that the stem cells would not help a child with CP; but there were more stories from actual families stating that the stem cells did indeed help their child, or loved one. I am not one to hold on to every word the media says. I did what I thought was right for my child, and followed my heart. 

Were there people who turned away because you wanted to do this and did it? How did you deal with people that may have had adverse negativity towards you when you made the decision?

*The only person who had a negative reaction was my husband's brother. He was angry because we made the decision before filling him. He is a devout catholic with many years of Jesuit study behind him. I stood my ground and sent him every piece of information that I had on the subject. 

At first it made me mad that he would think that I would do anything to jeopardize my son's health. Eventually he came around and excepted our decision. 

And many parents may want to know this for their own research.

 *I started by looking up articles on children with brain damage. I came across the YAHOO group  BIA4KIDS which led me to the groups CHINASTEMCELLS AND STEMCELLSAFETY. I was blown away!! I would spend endless hours on the group sites reading and reading and reading!! So many stories of hope and determination. I started to communicate with other mother's who had already had the treatment done for their kids. I could not come across one negative outcome!!     

Every child is different, that known, can you be a little more specific about what improvements you have seen in your son since the treatment?

  *Jacob was born with CORTICAL VISUAL IMPAIRMENT which means the part of his brain and his eyes sometimes do not communicate, his optic nerves were underdeveloped because of his prematurity. He would only see things that were illuminated with a black background; he had nastygmus, which is the back and forth motion of his eyes. He could not track. well, after the first treatment, his nastygmus was GONE!!!   Now, he can track, and pick up objects without using a black light. His vocabulary has tripled too. His overall well being seems to be maturing. He has not had a seizure in a long time.    

What has this really meant for him?

  *I think the treatments have given him a better chance at developing into a big boy! He can tolerate more on a daily basis. Like the DR's in China said, this lays the ground work for better cell communication. I believe that another trip to China may be in our future. So many people opened their heart to my Jacob. People who did not know us were sending words of encouragement. It was a beautiful time for my family. Jacob is a blessing to me and to everyone that meets him.