Deadline for life-changing op
Family scrambles for $150,000 to give their 4-year-old a chance to be pain-free
Afamily desperate to give their 4-year-old daughter the chance to walk and talk has just three months to fundraise for a life-changing $150,000 surgery in the US.
Faith Seo has been given a lastminute cancellation for selective dorsal rhizotomy surgery, which promises to ease the spasticity in her muscles that prevents her from walking, moving and talking properly.
But instead of Faith’s parents Jessica and John having a year to raise the remaining $53,000 to cover the surgery, post-surgery therapy, accommodation and flights to the US, they now only have three months.
Jessica said they were determined to do everything they could to make it happen as she believed the surgery, which cuts certain nerves that are not working properly, would enable her daughter to move in and out of positions without spasticity and pain and allow her to have a better quality of life.
“We can’t wait for her to be able to enjoy playing with her peers. Playing with other children without being on the floor. She can go to school knowing she can walk and get better and better and better,” she said.
“The surgery is best to be done before 5, which is why when they said April we were over the moon.”
Faith was born premature at 29 weeks and weighing 1.345kg. She spent the first three months of her life in NICU and another three months at home on a breathing tube.
However, three weeks into her hospital stay a paediatrician broke the heartbreaking news to her parents that she had periventricular leukomalcia (PVL), a form of brain injury caused during birth where the brain cells died creating holes in her brain.
At 2 she was diagnosed with spastic quadriplegic cerebral palsy, which causes stiffness and spasticity in her hands, arms and legs.
The North Shore couple were warned that their baby might never be able to walk or talk and that it could impair her intellectual knowledge and delay her growth, potentially leaving her wheelchair bound.
But four years on and with the help of relentless therapy including a three week intensive therapy course in Melbourne last March, funded solely by the family, Faith has already proved the doctors wrong.
Last year Faith started commando crawling and has gone from just saying “Mum” and “Dad” to stringing four to five word sentences together. Almost overnight she also started recognising colours and letters.
It is these major milestones and her Christian faith which has given Jessica hope that she will one day be able to set up and play with her friends without having to do it from lying on the floor.
Jessica still dreams of the day when she can walk beside her daughter without her needing any walking aids or assistance.
“We’ve been though very dark times.
“As soon as she was born it has been endless researching on the internet trying to find what it the next thing that will help her. We’ve been pushing ourselves, it is therapy every day.”
Faith is still “floppy” and often needs to be reminded to hold her head up as the weak muscles cause it to drop to one side.
The family began raising money for Faith’s surgery at St Louis Children’s Hospital in Missouri in the US last year. Already with the support of the Takapuna Play Centre, friends and family both in New Zealand and overseas and other groups including the Dolphin Friendly band who had donated proceeds from a recent tour, they have raised $97,000.
Jessica was now spending her evenings applying for grants and her church community to help them meet their tight target.
The couple had also sold everything they could.
“Most of my life I try and give and do things and this is the time where people have been giving back to me and giving love back to my family. I’m astonished and very emotional.” ● To donate money for Faith’s surgery visit givealittle.co.nz/ cause/faiths-wish-to-walk .
Most of my life I try and give and do things and this is the time where people have been giving back to me and giving love back to my family. Jessica Seo