Spastic tetraparesis and our little girl

Cord blood stem cells are the insurance policy parents hope they will never need. When Asia was diagnosed with mild spastic tetraparesis, however, doctors were able to give Asia access to the cutting edge therapy that has enabled her to lead a more fulfilled life.

“We were fascinated with the idea of storing our baby’s newborn stem cells” Asia’s parents write for The Parents Guide to Cord Blood, “A friend of ours told us about cord blood banking… we decided to go ahead to give our child an extra opportunity.”

When Asia was born, her cord blood was collected and stored by a process called cryopreservation. 

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A few months later, as Asia began to approach developmental steps, her parents realised she was having difficulties: “Asia had problems standing up and fell easily.” She was also struggling to take steps and to hold things securely in her hands. “As if this weren’t enough, Asia did not speak, and, generally, she wasn’t keeping up with other children.” 

Asia’s parents became increasingly concerned and took Asia to see various specialists. “We were told that Asia would most likely need injections of botulinum toxin in the future to help her. We could not accept that; we wanted to do more.”

At the age of two, Asia saw an orthopedist who diagnosed her with a mild spastic tetraparesis due to lack of oxygen at birth.

There is no proven cure for this condition, but the doctor suggested that Asia’s parents use the stem cells they had stored at birth in addition to physiotherapy, which could help to diminish the inflammation of Asia’s muscles.

After a few months, arrangements were in place for Asia to receive the innovative treatment pioneered by Duke University and used to help children with a range of conditions associated with cerebral palsy.

“At Duke they were so thoughtful, caring and efficient. It was obvious that they had a huge amount of experience. They explained to us that there was a good chance that Asia would benefit from stem cell treatment but that she should continue to do physiotherapy or some type of sport.

“Everything went smoothly as planned. On the first day, we went to the hospital for a check-up (we had already sent an MRI and Asia’s entire medical history) and on the second day, the infusion of her cord blood stem cells took place. Asia had no pain or discomfort during the infusion, which lasted about 15 minutes.

“On the third day, we went back for further checks and they told us that everything was going well. They also explained that in a few months’ time we would see the first improvements.”

 

After just two weeks Asia was starting to speak better, run and climb. It was obvious that she had greater strength in her arms and legs. It was all so amazing and we were so happy! 

Seven months later the family went back to the treating orthopedist who said he had never seen such improvements in a child with this type of illness; “the stiffness had almost completely gone out of her muscles.”

Asia’s physiotherapist was also amazed by Asia’s progress and said the little girl “just needed to practice some sport.”

 

All this was happening under our very eyes and we were so happy, we could hardly believe it.

“Asia is now four years old and she has just finished her second year of preschool and, even though she is the smallest in her class, she has managed to keep up with the other children. Asia is also attending a modern dance course and she participated in the end of the year show.”

 

She was so proud and happy, and so were we.

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