Freddy Petherbridge aspires to do things that other four year olds enjoy. Photo / Supplied
Freddy Petherbridge aspires to do things that other four year olds enjoy. Photo / Supplied
Being able to walk around a classroom by yourself is a big deal.
Especially if you are Freddy Petherbridge, 4, who developed mild cerebral palsy as a premature baby. Aiming for Freddy to start school next year when he turns 5, his parents are calling for up to 30 volunteers to come and help take part in a massage and exercise programme for Freddy called Home Intensive Therapy.
Freddy's mum Tessa Petherbridge says he is sharp as a tack and there is absolutely nothing wrong with his brain.
"When they find out Freddy has cerebral palsy, people assume he is intellectually disabled. But his legs are a long way from his brain.
"I get asked all the time, 'can he understand me?' and Freddy takes great delight in answering very firmly 'yes I can'," said Tessa.
Born at just 31 weeks' gestation (a full term baby is 38 to 40 weeks), at 18 months Freddy was unable to crawl, roll or sit and was diagnosed with cerebral palsy. The family committed to more than two years of neurological and mobility therapy and travelled to Rotorua or Hamilton for twice-weekly sessions. This was tough on everyone, including big sister Aria, 7, whom Tessa worries about feeling sidelined due to her younger brother's disability.
Freddy made significant progress and doctors recommended a major operation in January. Once he had recovered, intensive therapy followed.
"Now Freddy is able to walk some steps independently. This is a massive achievement, especially when at the outset doctors said he would be in a wheelchair forever," said Tessa.
Freddy Petherbridge loves having his face painted and playing Connect Four. Photo / Parent to Parent
Mindful of maintaining a fun and family-focused environment, Tessa says medical experts frequently comment that when it comes to therapy sessions Freddy is very determined and has a strong personality.
"He also has a great sense of humour. He has never got upset with the therapy sessions and said it's too hard.
"After his operation in January he was in a cast for six weeks. When the cast came off he had to learn to walk again from scratch and this was an incredible achievement for a 3-year-old," said Tessa.
She said Freddy sees himself as the same as everyone else.
"But he is now of an age when he questions why things are harder for him. His aspiration is to do the same things as kids his own age."
Tess says a realistic expectation is for Freddy's legs to be strengthened, so he can walk unaided for short distances or for shorter lengths of time. She says completing the Home Intensive Therapy course would mean Freddy could walk unaided around a classroom at school. Later in life, he could walk unassisted around the supermarket or around an office-based workplace.
"Our goal is for him to not be in a wheelchair in the classroom or at work. If he can stand he would be the same as everyone else. If you are lower down [in a wheelchair] then you are not equal."
His parents are asking for volunteers from the Taupō district to help move Freddy's body into positions so his legs are in alignment and so he can further build the muscles in his legs.
To start with there would be one 30-minute session per day, requiring two people. This would progress onto two 30-minute sessions per day, requiring four people. Sessions would build up from three days per week to six days per week.
Home Intensive Therapy was first carried out in New Zealand by Brain Injury Children's Trust founder Shirley Wilson. Her son Mark Wilson, now 25, was born with cerebral palsy as a result of lack of oxygen at birth. Shirley pioneered the use of neuro development therapy in New Zealand when Mark was 1, and called for volunteers from the community to help when Mark was 2.
On the Brain Injured Children's Trust website Mark says when he was diagnosed, his parents were told he would never walk or talk.
"They were to take me home, love me but don't expect much."
Shirley was having none of it and five years of neuro developmental theory set Mark on course for a life of high achievements. He competed in the Paralympics and represented New Zealand in athletics and table tennis, gained a degree from Waikato University, works for a leading Australasian finance company and lives independently.
At one time there was a team of up to 30 volunteers helping Mark, and Shirley had to get one of the volunteers to run a roster.
Carrying out initial screening of Freddy's volunteers will be Journey Together local area co-ordinator Mary Barnett, who says the volunteers don't need any prior experience and really just need to have a love of children.
"It is really about giving Freddy an opportunity to thrive and also getting to know Freddy and his family.
"For parents facing a long health journey it can feel like a lonely road. A volunteer will get to join Freddy and his family on that journey," said Mary.
Tessa says over the years people's reactions to Freddy have varied from staring as he struggles to walk, to offering him sweets.
"If I could change anything, it would be people's reaction to Freddy's wobbly legs. Instead of staring, please come over and say 'hi'," said Tessa.
To get in touch and discuss helping Freddy with Home Intensive Therapy email Mary Barnett at mary@journeytogether.co.nz.
