Mom of 2 1/2 year with CP old looking into stem cells for treatment

[CherieC]

Hello everyone, I have been reading this forum for 2 years or more but have just now figured I needed to introduce myself and my daugther. In Jan of 2009 we recieved a call from a family member asking if we would consider taking a baby from a family member that was born between 24-26 weeks (biological mother did not have prenatal care). The baby born extremely premature, with a grade 4 brain bleed on left and grade 1 on the right and was still in the NICU. We learned that Bella had been in the hospital with no one else for 2 months. We made the 3 hour drive to the NICU and from the moment they handed her to me, she was mine! I do not know if it was because she had no one for so long or if it was just meant to be, but she wouldnt let anyone else touch her if I was in the room. We were informed that she had a chance of developing CP due to the brain bleeds but they thought it would be mild.

She is 2 1/2 now and continues to fall futher and further behind in gross motor, fine motor and speech. She can not sit, stand, talk or crawl. It breaks my heart to see her want to play with a toy and cannot. I feel that stem cell therapy is our greatest hope of seeing gains at this time. We have tried OT, PT and speech and feeding therapy twice a week and even a 6 week restraint therapy last summer. The gains are small and I think stem cell would help make the gains eaiser for her. I am not expecting Bella to jump of the table and walk out of the room after stem cell but it would be wonderful to have help with the failure to thrive and other issues. We want to stay within the US but because we do not have her cord blood the Duke study is out of the question for us. We are looking into other treatment options here in the US and will consider everything that is open to us. If we end up having to go out of the country, I hope that we will be guided by others who have walked this path!