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Nerea's Story

March 2019
IVIDA Banco de Cordón

 

Nerea, cerebral palsy patient treated with cord blood stored at IVIDA Banco de Cordón

Nerea is an eight year old girl who lives in the Spanish town of Burriana in the province Castellón. She suffers cerebral palsy since a few days after birth. Nerea was born premature and she had some respiratory issues in the neonatal ICU, which caused a lack of oxygen in her brain, which led to cerebral palsy.

Since Nerea began to grow, certain motor difficulties appeared which required continuous work by the physiotherapists and a great effort for her family. When Nerea turned 5 years old, her parents received information from IVIDA, which talked about the autologous use (self-transplant) of umbilical cord blood stem cells to treat children with cerebral palsy.

Victoria, Nerea's mother, contacted IVIDA after receiving this newsletter. This was in February 2016. From there on, we started working together to try to use Nerea’s cord blood unit, with the aim of helping her to improve the symptoms of her cerebral palsy.

 

Victoria, madre de la niña NereaFor a few months, we were jointly trying to get Nerea treated in a Spanish hospital. This was not possible, because the Spanish Agency of Medicines and Medical Devices requested that Nerea be enrolled in a clinical trial, something that was not foreseen in Spain within the short term.

It must be understood that the infusion with stem cells for the treatment of cerebral palsy is not a transplant, it is still considered an experimental treatment. That is why the Spanish Agency of Medicines proposed a clinical trial. We understood that the response of the Agency was perfectly reasonable.

In order to avoid a detrimental delay in the possibilities of Nerea’s improvement, we next suggested that Nerea should be treated by the team of Dr. Joanne Kurtzberg at Duke University. Dr. Kurtzberg is a well-known and internationally recognized key opinion leader in cord blood therapy and she has conducted a randomized clinical trial using autologous umbilical cord blood units for the treatment of cerebral palsy.

Nerea para colorear una imagen

We contacted Dr. Kurtzberg’s team, and after several weeks of communication and a lot of work, finally, Nerea received an infusion of her own cord blood stem cells at Duke University Medical Center in the United States. This was in July 2017.

One year and four months later, we contacted Victoria to follow up on Nerea's evolution. The embedded five minute video describes the progress of her skills:

When we started the activity of IVIDA Banco de Cordón in 2009, we did not visualize that we could help a girl with cerebral palsy to improve her quality of life. For IVIDA, this process has been very enriching and satisfying, and it encourages us even more to continue working in this field of umbilical cord blood stem cells.