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She spent 21 days in the NICU. She was diagnosed with Hypoxic Ischemic Encephalopathy. Simpy put, she went without adequate blood and oxygen causing her brain injury. We learned many months later that her placenta was unable to deliver proper oxygen, blood, and nutrients to her because of undetected blood clots.
The day before her first birthday, Tenny was diagnosed with spastic quadriplegia cerebral palsy. Cerebral Palsy has a wide range of outcomes, however, Tenny is severely effected. The part of her brain that controls her muscles was damaged. She is currently unable to sit, stand, crawl, walk or talk independently. She experiences seizures, has microcephaly (a very small head), and has a g-tube to receive all her medication and nutrition.
Our whole world changed the day she was born. Our normal life consists of therapy sessions (physical, occupational, speech, feeding, warm water, and hippotherapy), doctor appointments, special equipment, prescriptions, and medical supplies. As different as our life is from most others, we try to give Tenny a typical life. She attends public school and is in a regular classroom with the assistance of an aide. She enjoys attending school, and her friends enjoy having her with them. Our goal is always to presume intelligence with Tenny. She is very socially aware and has such an awesome personality.
We have never stopped looking for ways to help Tenny reach her full potential. When Tenny's little sister, Harlynn, was born, we were able to bank her umbilical cord blood at Duke University for free with the intention that Tenny would be able to receive it one day.
Duke University has been conducting clinical trials for cerebral palsy using stem cells from umbilical cord blood for years. Tenny doesn't qualify to be part of a clinical trial because of a rare genetic microduplication on her 19th chromosome (she is 1 of 2 people in the world documented with her microduplication). Her small head circumference also disqualifies her from the trials being conducted.
Duke offers a program called Expanded Access, which allows children with cerebral palsy who may benefit from stem cell therapy to receive sibling cord blood, but not be part of the clinical trial. If Tenny was selected to be part of a clinical trial, it would be free for her to participate. However, because we are going through the Expanded Access program, we have to pay out of pocket for the stem cell therapy. They have quoted us a price of roughly $15,000.
Sibling cord blood has renewed our hope that Tenny will make progress! Cerebral Palsy is not a progressive diagnosis. The damage that was done, is done. She will not continue to get worse, and up until now, we haven't seen really any progress. In contrast, our focus has turned to retaining the few skills she does have and keeping the range of motion she has in her arms and legs.
The beauty of stem cells is that they do not have assigned jobs in the body. They are cells that can become what the body needs! Stem cells typically travel to areas of inflammation - where there is damage - which in Tenny's case, is her brain. Stem cells do not repair the damaged cells. They can, however, create a new pathway so that the skills the damaged cells were intended to produce can happen.
This has been a long journey to get to this point. We've waited 5 1/2 years for this. We've forgone donor stem cell therapy from other places in hopes that Harlynn's cord blood would produce the best results.
As strange as it feels to raise money for Tenny, we would do anything for her. We have to exhaust every avenue that could help her reach her full potential. We know it takes a village, and we are grateful that you are part of ours!
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