Kawai (Cairo) Naehu's SPML Surgery

We are humbly asking for support for our son Kawai’s (Cairo) upcoming surgery.  We tend to keep things private, so many of you may not know the roller coaster our family has been on the past 4 1/2 years.  We have gone to great lengths to diagnose, “treat” and create an overall positive quality of life for Kawai.  This journey has been lonely, exhausting and has tested us daily.  One that forced us to relocate our family for better care.  

Kawai had a very rough start. He was born not breathing and was without oxygen for an uncertain amount of time. This resulted in a list of diagnoses. Hypoxic Ischemic Encephalopathy being the first and Epilepsy shortly after. At the age of two he was diagnosed with Cerebral Palsy (CP).  For Kawai, this motor disorder means spastic movements and lack of muscle control.

To give you an idea of what CP is like for him try this. Tighten all the muscles in your body and try to move or bend your extremities without releasing the muscle tension.  Impossible right?  Imagine this is what your body does anytime you try to reach with your arm, roll from side to side or sit up.  This happens to Kawai when he tries to do the simplest movements. His brain tells his muscles to tighten up which make it difficult for him to move.  People with CP describe it as a boa constrictor squeezing your bones anytime you try to move.

Due to this spasticity, Kawai has started to develop hip dysplasia which, over time, leads to severe pain as his hip joints become more damaged.  His muscles are in a constant state of contraction preventing normal movement. It gets worse with growth and stops Kawai from doing simple activities like using his hand properly or bending his knee.

We learned about a treatment called SPML (Selective Percutaneous Myofascial Lengthening). This is a medical procedure that could save his hips and relieve discomfort.  This is his best chance at any type of movement such as rolling, sitting, standing and walking. It will also help prevent future hip displacements and surgeries.

Other types of hip surgeries are very invasive, painful, and put him at risk.  We have held off until this point due to overall costs. As he continues to grow, without SPML surgery, he will find it impossible to bear weight on his feet and will be challenged to find the strength and stability in his hips and knees to progress to sitting and standing. There are only two doctors who perform this type of SPML, both out of state.  Therefore, we will be travelling to Galveston, Texas July 1, 2019 for the surgery!

Following the surgery Kawai will need to wear an AFO (ankle foot orthotic). Pediatric orthopedic surgeon Dr. Paul Jordan (New Jersey based) does extensive assessments, and his AFO'S are more like teaching tools with the idea you won’t need them forever. He designs them with the brain in mind. Traditional AFO's become a ski boot for the child rather than helping them move and learn to use the foot.

We are requesting support of our family, friends and community to cover the high expenses. The funds raised will go towards the cost of the surgery, to purchase the AFO’s with Dr Jordan and towards the travel expenses.   

With all that Kawai deals with daily, he is a happy, intelligent, determined young boy. We are told that this procedure will allow Kawai to reach new possibilities and will improve his quality of life. We are grateful and thankful for any support and any contribution. Without your generosity these procedures would not be possible.

Mahalo,
Ali, Kimo & Kawai