Nina's Journey

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 one of the leading pioneers 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 intensive physio therapy and rehabilitation. Nina will have to re learn how to use her body when the spasticity is gone. She will have to learn to roll, crawl and walk again. But she will be able to do those things without pain and without the damage being done to her body that spasticity causes. 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.

We have researched a lot of therapy options for the12 months following SDR. We have found an intensive therapy in Australia called TheraSuit therapy. It is based in Adelaide. Each round of therapy is 3 weeks long, 3 hours a day, 5 days a week. In New Zealand there is unfortunately a shortage of private physio therapist, and the amount of physio covered by our health system is not enough, usually 1 hour a week or a fortnight. We will be given a home based program to do between rounds of TheraSuit therapy so we get the best results we can. We aim to do 4 rounds of therapy in the 12 months post SDR.

Unfortunately all of this comes with a price tag. We need to raise at least $180,000 for Nina to be able to have the surgery and four rounds of therapy. The more money we raise the more rounds of therapy she can have. She 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.