Hope for Camren

Hello everyone, as many friends and family know Camren’s journey these last four years have been anything but easy. He is a four year old outgoing, happy, beautiful child. Camren is currently non-verbal diagnosed with severe Autism and Cerebral Palsy with a long list of health concerns, he was born at 24 weeks premature mom went into early delivery which caused a placenta abruption. We are so blessed Camren has made it this far and even though he may not be able to say it back, we love him and he loves us. His beautiful smile reminds us of that everyday, the thought of loosing that breaks our heart. 

Camren had his first MRI done at two years old as doctors noticed his brain size was smaller then normal. They wanted us to wait a couple years before getting a second one done to see if things changed, he recently got his second brain MRI done. Which confirmed what we were praying would be a misunderstanding or a mistake. He was diagnosed with a rare brain disease called Pontocerebellar Hypoplasia, there are many different types when it comes to this disease. Researchers have described at least ten types of pontocerebellar hypoplasia. All forms of this condition are characterized by impaired brain development, delayed development overall, problems with movement, and intellectual disability. Many children with pontocerebellar hypoplasia live only into infancy or childhood, although some affected individuals have lived into adulthood.  In Camren’s case his Cerebellum and Brain Stem stopped growing around the age of one, doctors don’t know why or how. They also say there is no cure or anything to do to help. Some therapy’s have been shown to make improvements but not by much.

Camren’s father Jalen and I are not ones to give up, we have always felt like there has to be something we can do to help our little boy. From the four months spent in the NICU hearing he may not walk or crawl to his cerebral palsy may be so bad he will be in a wheel chair. I would go home every night crying, begging the lord to trade me places with my son. Camren is the strongest person I know, he has shown us time and time again he is a fighter and he doesn’t take no for an answer so why should we.

I have been doing my research for years now on Stem Cell Therapy, there is a Dominican doctor who has been following up with Camren and I through out his journey. He has seen amazing results with his patients, Camren was approved as a candidate for the treatment. Unfortunately the United States is still about ten years away from offering it to your average American, an sadly we don’t have that much time. I have been in contact with other parents who have seen results with Stem Cell treatment. The results have been so incredible it is changing little ones lives.  The procedure is not painful it is Donated Umbilical Cord Stem Cells given through an IV, it takes about twenty minutes. The treatment cost does include our stay of two nights three days and our car travel back and fourth while there. Even though we know there is no cure we have hope there is something like Stem Cells that can help improve some of his daily struggles and keep him with us longer. 

Due to the new diagnosis time is so important, it has sped up some of our time we thought we had to get the treatment money. Jalen and I are able to cover half of the treatment cost, we are reaching out to ask for help with the other half. Support, love and prayers are also very appreciated. We are not ones to ask, we try to be super parents and take on everything ourselves, but this new diagnosis has hit home for us. Our son is our entire world I don’t ever want to think about not having him to hold or kiss. If this treatment can help him, it will mean the world to us to be able to give him the opportunity to at least try. Thank you from the bottom of our hearts, all the support has not gone unnoticed it helps keep us all strong everyday!