Julien Miracle Baby

Hi there, some of you may know us and others may not. Thank you in advance for reading our story.  My name is Patricia and my husband Ken and I just had a beautiful baby boy named “Julien” on July 14th.  When I was pregnant, many people told me that “it takes a village” to raise a child. I didn’t fully understand what that meant until now. We are reaching out to see if our “village” and “neighboring towns” would be willing to help us with the cost of a life-changing treatment for our baby Julien.

 

Here is our story:

 

On Friday July 13th, I went about my day as usual. I went to work, went out for lunch, etc. I noticed that I didn’t feel the baby move so I called my husband to let him know. I remember friends telling me that the baby doesn’t move as much at the very end of a pregnancy (especially if he is on the larger side like Julien was) so I assumed it was ok. I went home from work and drank a green tea latte which wasn’t something I normally drank while I was pregnant but I knew that the caffeine would make the baby move a little. Nothing. Ken got home from work and I told him that I was concerned so we called my midwife. She told me to come to Northside Hospital (which is where I was going to deliver anyway) and that she was on call and would see me there. When we arrived, they hooked me up to an IV and a heartrate and fetal movement monitor. His heartrate was very strong, however the fetal movement line was very flat. They put me on a sugar water IV to see if it would increase fetal movement and it didn’t. The decision was made to slowly induce me so that we could get the baby out without much stress. My midwife and nurse told my husband to go back home to pack his hospital bag (when we left the house we only grabbed my bag) but not to rush because we wouldn’t be having the baby for at least 12-16 hours.

Julien Update ( 11/10/2018 )

By renkcub | November 10, 2018

Hi friends! I have been very busy lately (what else is new, right??). I am growing up so fast….it’s crazy to think that I am only 3.5 months old! I feel like I have lived an entire lifetime already with all that I have done so far (I bet mommy and daddy would agree too!).…

Julien’s post 10/31

By renkcub | October 31, 2018

Hi everyone! I have missed you since my last post! I have been keeping mommy and daddy very busy for the last couple of weeks between doctor’s appointments, physical therapy and my new excessive drooling habit. Last week was a busy week. I went to Children’s Healthcare of Atlanta (CHOA) and had something called a…

Julien Update (10/20/18)

By renkcub | October 20, 2018

Hi friends! Julien here. Can you believe I just turned 3 months old on October 14th?? It feels like time is flying by…..for me at least……maybe not for mommy and daddy since they have been so worried about me this whole time. I feel pretty good so far but I don’t have much to compare…

Julien Update-(10/7/2018)

By renkcub | October 7, 2018

Hi everyone! Today marks 1-week since we returned from Julien’s stem cell procedure in Mexico and we have had a great week back! This morning, Ken and I took my parents out to brunch for their 40th wedding anniversary at the 57th Fighter Restaurant in Atlanta, Ga. Here, you can enjoy an amazing brunch while…

Julien Update- Day 8 (10/1/2018)

By renkcub | October 1, 2018

Hello! We got home late last night and spent most of it trying to unpack, doing laundry, etc. Julien as SUCH a good boy on the plane and throughout the entire airport. Julien stole the hearts of the flight attendants on Delta and one of them shared her NICU story with me as I waited…

Julien Update- Day 6 (9/29/2018)

By renkcub | September 29, 2018

Buckner’s here, We are happy to report that Julien has been doing so well “post-procedure” that Dr. Mancias cleared him to fly home tomorrow (Sunday) rather than Tuesday. We originally scheduled our return flight for Tuesday in case he got sick from the procedure. Many children and adults can throw up from the influx of…

Julien Update- Day 5 (9/28/2018)

By renkcub | September 28, 2018

Hello friends! We spent the day at the apartment so that Julien can rest and lay “flat.” Since the stem cells were injected into the spine like an epidural (and they are thick in consistency), they like for the patient to lay flat as often as possible for 2 days post-procedure. Try telling that to…

Julien Update- Day 4 (9/27/2018)

By renkcub | September 27, 2018

Hi everyone! Our little superman did such a great job today during his procedure. Of course he couldn’t have done it without the amazing staff of the University Hospital here in Monterrey, Mexico. Dr. Consuelo Mancias (pictured to the left of me in the blue scrubs) and her team of hematologists did such a wonderful…

Julien Update-Day 3 (9/26/2018)

By renkcub | September 26, 2018

Hi Everyone! Julien here. Thank you so much for all your messages, calls and support! I have felt the love and I know that my mommy and daddy have as well. They have really needed it throughout this entire journey. After all, I gave them quite a scare when I was born. Today I had…

Julien Update-Day 2 (9/25/2018)

By renkcub | September 25, 2018

Day 2 Hi everyone, Today marks a very important milestone— the 3rd day in a row that our baby slept through the night!!!! I think he likes it here in Mexico:) Today also marks another important event….day 2 of 3 of the G-CSF shots that are stimulating his bone marrow cell production. We went into…

Julien Update (9/24/2018)

By renkcub | September 25, 2018

Our journey in Mexico has begun! We are so proud of our sweet baby…….he literally slept all the way from the security check point at Hartsfield in Atlanta, all the way to the arrival to our apartment where we are staying in Mexico. When you get older, priorities change from going to bars and planning…

Julien Update (9/22/2018)

By renkcub | September 22, 2018

Hi everyone, After an arduous 2 week wait, we received Julien’s 24-hour EEG results….unfortunately they were abnormal again. At this point, his neurologist wants to do a repeat EEG in October after we return from doing the stem cell therapy in Mexico. If his results come back normal, they will begin the process of weaning…

Julien Update (9/14/2018)

By renkcub | September 14, 2018

Hi everyone, After an arduous 2 week wait, we received Julien’s 24-hour EEG results….unfortunately they were abnormal again. At this point, his neurologist wants to do a repeat EEG in October after we return from doing the stem cell therapy in Mexico. If his results come back normal, they will begin the process of weaning…

Julien Update (9/4/2018)

By renkcub | September 4, 2018

Hi everyone! I can’t believe it’s already September! It seems like only yesterday that our sweet boy was born and now he’s 7 weeks old. Thank you SO much for all of your love, support and donations towards Julien’s treatment……we reached our goal and we are so incredibly grateful to all of you. When my…

Julien’s EEG Take 2! (8/20)

By renkcub | August 20, 2018

Hi there, today Ken and I brought Julien to his neurologist’s office for a repeat EEG. He had a 1-hour EEG a week ago and it came back slightly “abnormal.” They saw some “spikes” on the left side of his brain and wanted to do a longer study to gather more information. Today was a…

Julien’s Update 8/14

By renkcub | August 14, 2018

Thank you for your patience on waiting for another update as this week has been very busy for us. Julien had an occupational therapy appointment where they checked his muscle tone, his bottle feeding skills, etc. They provided some recommendations of where we should stretch him out since his muscle tone is still tight (around…

Julien’s Update 8/1

By renkcub | August 1, 2018

Julien has been doing extremely well since he has been home for a week. He has kept us very busy with multiple doctors appointments… I think he has more appointments than the president. Tomorrow he has a repeat hearing test and we go down to children’s healthcare of Atlanta every week for them to draw…

Julien’s Update 7/23

By renkcub | July 23, 2018

We received a very nice surprise this morning that he was ready to go home tonight. We have spent the whole day learning what we needed to regarding medicine that he has to have for the next month or two to prevent seizures, preparing his bottles, etc. Even though Northside Hospital has been a major…

Julien’s Update 7/22

By renkcub | July 22, 2018

Today was a little rough for poor Julien. He got circumcised this morning. He handled it well and they gave him some Tylenol to ease any discomfort. They have been carefully watching how he eats which is the main precursor for when he can go home. They watch for his ability to suck on a…

Julien’s Update 7/21

By renkcub | July 21, 2018

Today Julien had the rest of his hearing test and everything appears to be totally normal. They do want us to still do a follow up in a few weeks just to make sure nothing has changed but everything looks very good. He is getting better at feeding from a bottle but he still coughs…

Julien’s update 7/19

By renkcub | July 19, 2018

Thank you so much for checking up on us. Your prayers and concern mean the world to us. Today was a very busy day . T he neurologist said there was “moderate” damage all over the white matter of the brain according to the MRI. Multiple doctors are coming in to run different types of…

Julien’s Birth

By renkcub | July 14, 2018

Julien was born 12:51 am Saturday Morning…..There were some complications……he was not getting enough oxygen through the umbilical cord  , which cause lack of oxygen to his brain. They had to do an emergency C section. He is on a 72 hour watch. He will have stay at the hospital for 2 weeks.They are looking…

Stem Cell Therapy Information

Consuelo Mancias Guerra

Dr. Consuelo Mancias Guerra

The discovery of stem cells (SCs) has led to an ongoing revolution of medicine. Starting back in the 1950s, blood-forming SCs were first used to repopulate a patient's immune system. This was the first example of a successful SC therapy, and is still commonly used today for blood and bone-marrow-related cancers such as leukemia and myeloma.

Recently, the biology of SCs has created novel therapies for previously intractable conditions. One area where cell therapy has generated hope is neurology. Cellular therapy of the injured brain has been studied in preclinical models for more than a decade, providing the basis for the development of new therapies for a broad spectrum of human neurological diseases. The mechanism by which transplantation of SCs leads to an enhanced functional recovery and structural reorganisation is still not understood. Nevertheless, the use of autologous bone marrow-derived SCs does not face ethical, political, biological and regulatory hurdles, like embryonic stem cells does.

Cell therapy protocols for cerebral palsy are an example of a new approach to a condition that is difficult to treat. The current US clinical trials, listed in ClinicalTrials.gov, are dependent upon the fact that parents chose to preserve their child's umbilical cord blood at the time of birth. Our clinical trial, listed as ClinicalTrials.gov NCT01019733, was carried out at a University Hospital in Monterrey, Mexico, where we treated children with cerebral palsy that were not able to bank their cord blood. Instead we use SC derived from the bone marrow.

The patients enrolled in our trial received a subcutaneous medication for 4 consecutive days to stimulate their bone marrow to produce SCs, their bone marrow was then harvested, SCs were concentrated at the laboratory, and then they were delivered through the patient's cerebrospinal fluid on the fifth day of the procedure. In this trial, we made the translation from the laboratory to the clinic both medically and economically feasible. Our team conducted a thorough evaluation of each patient, from initial interviews to the final assessments. Patients came to us from different countries, including Mexico, US, Canada, Honduras, Colombia, and Italy.

The condition and response of patients in our trial was assessed at regular intervals to ensure the safety of the therapy. Even with this small group, less than 20 patients seen over 36 months, we were able to reach our goal, which was to demonstrate the safety of the procedure. This success opens the door to a phase II clinical trial that can test the efficacy of autologous bone marrow SCs. The preliminary results regarding efficacy were promising. We cannot say more, because the data are currently under review for publication. We hope that our work will offer a better quality of life to children with cerebral palsy.

In conclusion, while the field of SC medicine is rapidly maturing, many potential SC therapies remain theoretical or restricted to successes in animal trials. Countless studies are still required on the expanding frontier of SC research before a complete mastery of SC manipulation for maximum therapeutic potential can be achieved. In the meantime, we believe that patients with cerebral palsy can be treated with their own bone marrow SCs when their cord blood SCs were not preserved.

Dra. María del Consuelo Mancías-Guerra attended medical school in "Universidad Autónoma de Nuevo León" and graduated in general practice in 1992. She was trained in Pediatrics from 1993 to 1996 and then in Clinical Hematology from 1996 to 1998 in the University Hospital "Dr. José E. González" of the same University at Monterrey. She became a fellow in bone marrow transplantation and stem cells cryopreservation at the University of Texas in San Antonio from 1998 to 1999. She is board certified by Mexico's "Consejo Mexicano de Hematología". Since 1999, she is head of a private blood bank at the "OCA Hospital" in Monterrey, and since 2001, became part of the Hematology Service of the University Hospital in Monterrey. There she started the cryopreservation laboratory and the first public cord blood bank in Mexico. Dr. Mancías-Guerra participates actively in training medical residents and PhD students, has written more than 20 publications in medical journals, and 8 chapters in books about pediatrics and hematology. She has won several national awards of medicine. Her main area of research interest is cellular therapy, in which she has clinical trials running and listed in ClinicalTrials.gov. References Knoepfler PS. Deconstructing Stem Cell Tumorigenicity: A Roadmap to Safe Regenerative Medicine. Stem Cells. 2009; 27(5):1050-6. doi:10.1002/stem.37 Sng J., Lufkin T. Emerging stem cell therapies: treatment, safety, and biology. Stem Cells International. 2012; Article 521343. doi:10.1155/2012/521343 Carroll JE, Mays RW. Update on stem cell therapy for cerebral palsy. Expert Opin Biol Ther. 2011; 11(4):463-71. doi:10.1517/14712598.2011.557060 To learn more about cord blood banking, visit Parent's Guide to Cord Blood Foundation at https://parentsguidecordblood.org/en/news/new-therapeutic-strategies-cerebral-palsy

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