Jessica Seo with her daughter 4-year-old Faith Seo, who needs surgery to allow her to walk after being born with periventicular leukomalacia, which led to cerebral palsy. Video / Dean Purcell
A family heading to the United States set aside fears of catching Covid-19 to give their daughter the best chance of being pain-free and eventually being able to walk.
The five-year-old Faith Seo, who has spastic quadriplegic cerebral palsy, was booked in April last year for surgery, which is not performed in New Zealand, but was postponed due to blockages here and in St. Louis.
Her parents redirected the operation to this January – although they risked being less effective than the older Faith – but thought at the time that there would be a vaccine and the risk of Covid-19 would be reduced.
During this time, Faith’s muscles gradually tighten, making it difficult for her to place her legs in front of each other without crossing them or keeping her arms close to her.
Fully aware that the pandemic in the United States was deteriorating, her parents considered for a long time whether to continue the journey, but decided that this was the best option to help their daughter – given that surgery is ideally performed on children. at the age of 3 and 4.
“As her muscles become more tense, this can make surgery more difficult for her, she may need other surgeries … When they are younger, their healing is much better and they will have a better result.” said her mother Jessica Seo to Vestitel.
But that means doing everything you can to eliminate the risk of the family getting Kovid.
“At some point I have to come up with every little detail to defend ourselves, to take her there, because I can’t predict the future and I can’t wait any longer. [for her to have the surgery], “Jessica said.
“I just have to take it and I just have to have a lot of courage … it’s very scary.”
Missouri reported 33 Covid-related deaths and 3,276 new cases over the weekend. In the United States, deaths have reached 374,000, while cases have exceeded 22.4 million.
Selective spinal rhizotomy, performed by renowned surgeon Dr. Tae Sung Park, should relieve Vyara’s muscle spasticity and give her the best chance of being able to walk on a crutch or walker and with less pain.
This has changed the lives of many other kiwi children whose parents – like Feith – have raised money to make it abroad.
Their stories gave Seo hope that this could dramatically improve her daughter’s quality of life.
If it succeeds, Faith will finally be able to sleep soundly without waking up in pain.
Down the track, she can even play with friends without having to lie on the floor and speak in full sentences.
After 18 months of waiting for surgery, they will finally travel to Missouri next week.
She will spend a month there before returning home.
Herald readers dug deep last year and helped the family reach its ambition in order to raise the remaining $ 53,000 needed for the $ 150,000 operation.
Seo was extremely grateful for the support of the New Zealand community – as well as for help from friends and family abroad – because without the donations, the trip would never have been possible.
Seo is taking all possible precautions to protect her family from receiving Covid-19 and has brought protective equipment, including masks, shields, gloves and disinfectant. It also plans every opportunity if they have to stay in the United States longer than planned.
“We’re just very vigilant to take care of her. It’s very important because if she gets Covid-19, her surgery will be delayed again, so we’re trying to be very, very careful,” she said.
While Seo is firmly focused on taking Faith to the United States for her surgery, she had no illusions about the long road ahead and the intensive rehabilitation that will be needed over the next two years for her daughter to play with friends. and walk alone.
Faith works hard with physiotherapists to improve their muscle strength and this, along with other therapies, will be very important when they return home.
We have a long, difficult road ahead of us.
Dr. Jennifer Summers, a senior researcher in the Department of Public Health at the University of Otago at Wellington, said many studies have found SDR, which is an irreversible surgery that requires intensive physiotherapy for about two years after surgery, improved overall motor function, quality of life and reduced pain.
“Given the strong clinical evidence of positive outcomes for many children after STDs, many New Zealand families are deciding to privately fund this surgery abroad, along with the necessary follow-up physiotherapy.”
However, she said the operation was not suitable for every child with cerebral palsy and there were studies that reported side effects.
“I hope that one day SDR will be funded in New Zealand: either for the operation that will be performed in hospitals in New Zealand, or for the travel expenses that will be funded for Kiwi’s children and their wives, because SDR is a life-changing procedure. “
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