Nina's Journey, The final push

This is our second Give-a-Little page we have set up for Nina. Our first page was active for one year and raised $13,921.90. That page expired on the 22nd of February. As we have not reached our goal yet we are still pushing on to raise the remanding funds we need to reach our goal of $100,000. We have done fundraisers in our community and have raised a further $19,923.75. Please read on to learn about our cause.

Nina has Spastic Quadriplegia Cerebral Palsy. It is the most severe form of CP. This means that she has extremely high muscle tone that causes her arms and legs to be rigid and hard for her to move.

After three years of research we have found an operation that would be life changing for Nina. The procedure is called Selective Dorsal Rhizotomy or SDR for short. This operation cannot be done in New Zealand as it is a very specialized procedure. Dr Park from St Louis Children’s Hospital is the leading pioneer of the operation. We emailed Dr Park and his team videos, x-rays, scans and other medical information to see if Nina would be a suitable candidate for the operation. To our delight and relief Nina is a perfect candidate.

The surgery is a very major procedure that requires cutting nerve rootlets in Nina’s spinal cord. The spasticity (tightness) of Nina’s body is caused from abnormal messages being sent from Nina’s brain, through her nerves and to her muscles. Each nerve will be separated into about 30 nerve rootlets and each rootlet will be tested. The rootlets that are carrying the abnormal messages will be cut, stopping the messages from reaching Nina’s muscles and preventing spasticity from occurring.

The operation will be followed up with 12 months of rehabilitation. Nina will have to re learn how to use her body when the spasticity is gone. But she will be able to do things that she is not currently able to do, and will not be able to do with out surgery. Dr Park expects Nina to be able to walk with only the assistance of crutches, without SDR that will basically be impossible for Nina to ever do. Nina's only form of independent mobility right now is a fully automatic wheelchair, so the possibility of Nina being able to walk with crutches is a HUGE deal. Over time spasticity will create contractures (deformities) of her joints, muscles and bones, which will have long term side effects on her health. Preventing those contractures, and giving her a body that is far easier to control and move, will give Nina a far more ordinary and pain free life.

Nina is such a bright, happy and smart wee girl, and we know that if she could have a body that works she will go far in life.