Alyna Toyias has never asked her parents why, at the age of six, she still can’t walk unaided. She has never asked why that other little boy or girl can run and play without the help of the walking frame or the wheelchair that she needs. Her mother, Michelle Toyias, is waiting for that day, when she will have to answer the heartbreaking question.
“It’s going to be painful to tell her when the day comes, I don’t know how I’m going to react. We’ll just tell her that she is a special girl with special needs,” Michelle Toyias tells Neos Kosmos.
You would think that Alyna, as a six-year-old, doesn’t see anything different in her condition. But the reality is that she is just one courageous and smart little angel who is coping amazingly well with her diagnosis, cerebral palsy spastic diplegia. And she never complains.
Alyna was born prematurely and her parents soon noticed she was a bit behind in everything. But when she didn’t start crawling and then walking, an MRI scan at the age of two revealed that she had cerebral palsy. There is no need to say it was devastating news for the first-time parents, Michelle and Kon, of Adelaide.
“I just couldn’t believe it when she was diagnosed. I was in denial for a long time, it was hard to put my head around it and what the future was going to be like. Will she get married? How will she walk down the aisle, will she be able to do that?” says Michelle, when the deep breaths she takes in order to talk about her daughter’s diagnosis allow her to do so.
“But now, I’m just so positive, when I see that she can do anything she puts her mind to. She is a strong little girl and she has it in her. She is such a beautiful soul; you see it when she smiles and she just lights up the room.”
Spastic Diplegia cerebral palsy, that Alyna has been diagnosed with, is caused by one form of brain damage. It is known that prematurely born children are at high risk of developing patterns of brain injury that involve the rich-with-nerve-fibres white matter that interconnects different portions of the brain. White matter injury results in Diplegic CP, which causes muscle stiffness, affects leg movement and walking, and often cognitive and learning abilities. And, unfortunately, in these situations the nervous system fails to repair itself.
“Spastic Diplegia affects Alyna’s lower part of the body, her legs. She can’t walk – she uses a walking frame, or wheelchair for long distances as she gets tired with the walker. The upper part of her body is fine,” Michelle says.
“She also has learning disability, and that requires a bit of speech therapy and a lot of occupational therapy. But she improves all the time and that’s a good thing,” says Alyna’s father, Kon.
Kon and Michelle are now determined to do anything they can to raise $112,000 needed for surgery in St Louis, in US. The operation would, almost certainly, give Alyna the chance to make steps on her own. The surgery in St Louis has been performed over 2,700 times now, and countless children have gone from wheelchairs to walking in walkers or even unaided.
As we speak, Kon tells us around $20,000 have been raised up to now.
“The operation in the US, called Selective Dorsal Rhizotomy, would remove the spasticity and stiffness she has. Now she has botox, which is a temporary relief to her, and it lasts two to three months; but the surgery would get rid of it completely. That’s a bonus in itself, but with a lot of therapy after the surgery we hope she will walk at least with a cane or crutches and be more mobile,” Michelle explains.
Alyna’s surgery in the US is set for December this year. Until then, her parents and friends will be doing a number of fundraisers to afford the operation. The money raised would cover the costs of the surgery, the costs of trip, as well as an intense post-surgery physiotherapy program.
“The physiotherapy will go for 18 to 24 months after the surgery. That’s when the benefits of the operation are realised, once the rehabilitation process has been done.
“As one doctor put it to us, if you relieve that spasticity – it sort of frees you up and you are not so distracted anymore. They noticed that cognitive ability also improves after the surgery,” Kon says.
On Sunday 15 September, around 42,000 people will be running, walking or wheeling at Adelaide’s annual City-Bay run from the CBD to Glenelg. Over 100 of them will take part just for Alyna’s operation, in what is a key part of the fundraising campaign. Alyna will also make her way to Glenelg, in the wheelchair. It hasn’t been confirmed yet if a full registration fee or a percentage of it will be donated directly to Alyna’s cause by the event organisers.
“We have just over 100 people who are doing the City-Bay, which is huge, and it just keeps on going, people keep joining. We hope that the full registration will go towards fundraising,” Michelle says, overwhelmed with the support of the community.
And the St George College Alyna attends seems to be amongst the biggest supporters, keeping with the ethos of the Greek Orthodox school. The college has set up a committee to help raise funds for the Alyna and Friends Charity, for what they believe is a worthy cause.
“Alyna’s school teachers and friends have been fantastic, I am overwhelmed. They have been doing an amazing job,” tells Michelle.
Apart from the City-Bay run, a fundraising quiz night for Alyna will be held on 4 October, while the big Alyna and Friends gala dinner, on 26 October, is already sold out.
And for parents, Michelle and Kon, this gives a glimmer of hope that they will be able to travel to St Louis.
“It would be great if she could walk after the operation. That’s the ultimate hope, but even if it makes her life a lot easier it’s enough, that’s what we want out of this. From standing to sitting in her chair, improving cognitive abilities. I think she understands that we are going over there and the doctors are going ‘to do something with her legs’ – she actually told that to us once. We are confident we’ll be able to go,” says Kon enthusiastically.
To find out more about the City-Bay run and to register, visit http://www.city-bay.org.au. To help in fundraising efforts and learn about ongoing events for Alyna, visit the charity website www.alynaandfriends.com. If you live in or close to Adelaide – just join the run and help Alyna stretch her wings. If you run, you will help Alyna do the same in the future. And for this six-year-old angel with cerebral palsy and her parents, it’s their biggest dream.
If you wish to make a donation, do so:
Account Name: Alyna & Friends
Bank: National Australia Bank
BSB: 085-446
Account Number: 1986-499-63