Peyton’s Journey: The Next Step….
Peyton Lewis Funding is a private group of Friends and Family which help raises funds for the best opportunities for Peyton Lewis. Peyton is a six year old beautiful and energetic little girl. She has been diagnosed with Spastic Diplegia Cerebral Palsy with hydrocephalus at the age of one. Peyton is non-verbal, unable to walk and dependant on someone. Peyton is also an incredibly loving and social human being who adores books, IPad, smiling, laughing, tickling, cell phones, bathtime, beach, friends and her family.She is far more like any other kid you have ever met than she is different and special.
Since her diagnosis Peyton’s mum Jayne, has been continuously researching and sourcing ways and means for a better life for her daughter. Over the past few years Peyton has had experienced some incredible opportunities for her development. She went to the U.S.A. for an Intensive Therapy session, amazing results after three weeks and also being introduced to Anat Baniel Method. Unfortunately, after a year of Peyton’s Intensive Therapy Session she became ill, resulting in two surgeries to replace the shunts and placing them on both sides of her brain. Since then and up to date Peyton’s primary form of therapy is the Anat Baniel Method and I encourage everyone to look into it and/or read a copy of Kids Beyond Limits: The Anat Baniel Method for Awakening the Brain and Transforming the Life of Your Child With Special Needs. This book is part of the wave of the future in treating brain disorders.Peyton has been working hard with Anat Baniel Method of Therapy and has been making tremendous strides. Her head is controlled better and simple daily chores like feeding, bathing etc have become easier.
Our next step in Peyton’s development is a surgery called Selective Percutaneous Myofascial Lengthening, SPML.
“SPML refers to an outpatient surgery under a general anesthetic for the treatment of the spasticity and tight tendons in children with Cerebral Palsy. This minimal invasive surgery decreases muscle tightness and spasticity from contractures in the hips, knees, and ankles. Results have shown that SPML significantly improves emotional well-being and self-esteem, feelings about functioning, and participation and physical health in kids with cerebral palsy.”
This type of SPML method was developed by Dr Nuzzo who is one of only two doctors performing this type of surgery in way that is slightly different and less invasive than the traditional way. The SPML procedure is done under a general anaesthetic (takes about 1 hour) and involves the treatment of spasticity and releasing tight bands of tendon. The word “Percutaneous” in the name SPML means making very small skin incisions (instead of cutting it) so no stitches are needed. After the surgery Peyton would have some serial casting to her legs/feet which have to be on for about four weeks. These type of casts are not like the usual ones we are used to but thinner and more flexible with the toes free. Think they might be called ‘walking casts’. After four weeks we would see an AFO specialist to receive custom-made specialised foot splints/braces for Peyton. She will have to wear these AFOs daily for about a year and after that not at all or possibly a couple of hours a day. Each child is different and will therefore need different things.
I know that there is not ‘quick fix’ to Peyton’s cerebral palsy as it is neurological but if we were to travel to the US and do this type of surgery she would have a greater chance at walking, sitting up and overall becoming more relaxed in her own body. I have read through the doctor’s websites, read many testimonials and have so far only heard good results from happy parents around the world in regards to SPML. Very interesting indeed but will of course be fairly costly. The surgery costs about $10,000 US, the specialised AFOs about $3,000 US, plane tickets ,plus physiotherapy, accommodation, food etc…..
THANKING YOU IN ADVANCE.
Jayne & Peyton