“I keep thinking, what if I knew about the Duke University clinical study and we hadn’t saved Katie’s cord blood— we would not even have had this chance. She has a chance,” Katie’s mom Amy says. Her husband Paul chimes in, “If this helps Katie—it’s huge.”
Amy and Paul are talking about their daughter Katie—a sweet, loving, social and affectionate four year old with a hearty laugh, infectious smile and lots of curiosity. Katie was born with a condition called hypotonia — low muscle tone that affects both her gross and fine motor skills. As a result, Katie can’t walk independently, she never had the coordination to crawl (although she’s quite the scooter!) and she was not physically able to sit until she was 16 months old—almost a year later than typical child development. Katie’s speech is also affected—she is currently saying a few words but working hard with therapists to learn to pronounce different letter sounds.
Rewind a handful of years when Amy and Paul were expecting. Amy got an email from her cousin. “Have you considered banking cord blood?” her cousin asked, reminding Amy that their family had a lot of leukemia in it. “Maybe one day it will help someone.”
As it turns out that “one day” has materialized. After learning about a study at Duke University where children with cerebral palsy are being given their own cord blood stem cells to explore if it is improving their condition, Amy got in touch with the study administrator. Six weeks later she found out that Katie had been accepted into the study. “It was one of the best days of my life,” recalls Amy.
It’s only been six weeks since the infusion at Duke University, which took place in early January 2010, and while Amy and Paul were told not to expect to see results for more than half a year, they don’t know how else to explain Katie’s progress. She has begun pointing to pictures in books, stomping her feet and bouncing to music. She has also initiated walking with her walker—something that only ever happened before with a bribe of M&Ms. Like Amy and Paul, Katie’s therapists can’t believe her progress, noting lists of new and improved skills daily and acknowledging that Katie seems more focused. Amy welcomes their feedback because although she’s trying to be objective, “I worry that I’m making things up because I’m so hopeful.”
In fact, Amy admits, “I have to pinch myself sometimes and say, is this really happening?” As testimony to the improvements Katie is experiencing, Amy started a blog “Katie’s Progress”. While the blog helps Amy and Paul keep family and friends up to date with Katie’s developments, Amy has a higher purpose for it. “I want my blog to help spread cord blood awareness. I want people to know how important it is to save cord blood for their children. If you are expecting, you need to do the research and learn about your options.”
She continues, “We banked cord blood not thinking we would ever need it. Here we are four years later, and it’s totally helping our daughter.” Paul agrees, “If you have children, there’s nothing else you want to do but help them. This is something we did and it’s the best decision we ever made.”
See Katie’s progress for yourself!
Check out Katie’s blog , share your thoughts in the comments field below and help Amy and Paul spread the word about cord blood awareness!
**UPDATE 11/3/10**
The Murphy Family recently appeared on TV! Watch Katie’s story and see how she’s doing since her cord blood infusion in January 2010. Want to read more about Katie’s story? Visit the Murphy family’s blog.
**UPDATE 7/6/11**
The Murphy’s share their story with MSNCB.com, talking about their decision to bank and Katie’s ongoing progress – which her parents consider to be a success story:
MSNBC.com Article - Clearing up the confustion about cord blood
Want to read more about Katie’s story? Visit the Murphy family’s blog.
What a great story! Hoping that Katie’s progress continues and wishing this family all the best.
Wonderfully uplifting…I hope Katie continues to make great strides! Good Luck, Katie
Go Katie ! A little catching up to do but on her way ! What a wonderul story and what wonderful parents Katie has ! Stay strong and believe – Katie will be a testament to Cord Blood Banking and to what love can do ! You will all be in my prayers. Be blessed!
thanks for sharing this story, Katie is a blessed girl. I will pray for Katie’s progress, Amy and Paul. stay stron and believe-Katie will be doing a lot of new things soon.
what a great story…i have been working with children with similar delays for 12 years and always love hearing the positive stories!!!!! what may seem like small achievements are actually great big strides in progress…just any thing a child does for the first time…..i contine to be in awe of the progress kids make and Katie is awesome!!! and so are amy and paul….keep up the great work….and keep the faith!!! Good luck and best wishes!!!!
It is nice and comforting to hear things like this. I have my youngest daughters cord blood stored and I have two girls with type 1 diabetes and we are all hoping for good news some day. I hope your daughter keeps getting better may the Lord give you and your family strength. Best of luck!!!!!!!!!!!
Amy and Paul are my former neighbors. They are both amazing parents and amazing people. I believe Katie will continue to improve. What an amazing and inspirational story! I miss you Amy and Paul! Hang in there! You are doing amazing!
I continue to pray for Katie and her progress thanks for keeping me up to date……
What a fabulous story!! Thank you Amy and Paul for sharing your story with us! I pray that Katie continues to make improvements.
It has been just about 3 months and we continue to see incredible progress with Katie that seems too good to be true to be just a coincidence! I appreciate and enjoy reading everyone’s comments, it’s nice to know people we don’t even know are cheering us on!
How did you learn about the Duke study? We have a son 2 years old with Down Syndrome and we banked his 8 month old brothers cord blood at birth. DS kids have hypotonia do you think they would consider doing a transplant on a DS child if they matched? How do I find out?
Rachelbbaxter@gmail.com
Hi, Rachel. The Duke study is not currently using sibling cord blood stem cells. I will follow-up via e-mail with contact information so that you can discuss your case with someone at Duke.
Thanks for the updates on Katie. She is in my prayers.
HI I too would like the information if you could send it to me about the contact information for Duke. I have a one month old who has down syndrome and we banked his and his sister’s cord blood. Thank you so much!
Way to go Katie! I am in contact myself with a Dr at Duke. My daughter suffered oxygen deprivation at birth and as a result will likely have some form of CP. She is only 4 months old and does not qualify for the present trials but I am hopefull there is someway they can help us to get her blood reinfusd, seems to me giving it earlier would help her just as much as Katie. Hopefully I will hear something soon, something good
Thanks to God,modern medical technology,and your pforesight.Dave G.
the best thing that ever could have happenned to katie was when god gave her you two for her parents. i will continue to keep her in my prayers. stay strong.
Hi Gilbert, I sent you e-mail in response to your comment.