‘When can I walk like my friends?’
A BRISBANE family is hoping to raise $200,000 so their twin boys can receive life changing surgery and the chance to walk and play like other three year olds.
Benjamin and William Rosuck have Spastic Quadriplegia Cerebral Palsy, which means they have tightness and pain in their limbs and are unable to walk.
The boys have undergone many hours of therapy and have been to Mexico twice for stem cell injections.
Parents Daniel and Sharon, of Virginia, dream of the day their boys are able to walk independently, and are pinning their hopes on selective dorsal rhizotomy (SDR) surgery in the USA.
The surgery involves cutting the spinal nerve and permanently removing all spasticity (tightness) in the boys' lower body.
A second surgery may follow to lengthen the muscles in their legs, as their spasticity currently stops this from happening.
Mrs Rosuck said she felt scared, excited and optimistic about the surgery, which is scheduled for December at the St Louis Children's Hospital in Missouri.
"As a parent you do worry if you are making the right decision for your children. This is a decision that will change how their bodies feel to them.
"We have been watching the wonderful success stories of kids who have had this surgery since the boys were first diagnosed.
"The benefits are truly life changing. It will permanently remove the boys' spasticity, improve their sitting and standing postures as well as transitions between postures, and improve their balance and level of comfort.
"Remarkably, if they are to have this surgery, Ben will be able to walk using a walker and he even shows potential to use crutches.
"William will be able to walk using crutches but, more importantly, has the potential to walk independently."
Currently, the boys can stand in a standing frame, and can walk assisted in a walker for 20 metres.
Mrs Rosuck said although the twins were "delayed", they are happy, cheeky boys.
"What they lack in mobility they make up for in speech and cognitive ability. They are up to in-hand manipulation which is age appropriate.
"They are starting to say 'when can I walk like my friends?' and ask if that person's legs work properly."
Mrs Rosuck said SDR was offered in Australia but "it's not exactly the same".
"The procedure here is a lot more invasive and has a much longer recovery time."
According to the Cerebral Palsy Australia website, SDR is "a reasonably new and still somewhat controversial technique. It is a permanent and non-reversible intervention (and) long-term benefits and known side effects are not yet available."
According to the website of St Louis Children's Hospital, which has performed more than 3000 SDR surgeries, there has been "no long-term complications in any of (the) patients who underwent surgery as early as 1987. Our results indicate the long-term safety of selective dorsal rhizotomy."
Mrs Rosuck said the $200,000 cost included flights and accommodation for her, her parents and the twins, surgery and three weeks of post op rehabilitation.
"Each boy needs a support person and an extra person to carry all their stuff. At this stage I will not be spending Christmas with my six and eight year olds (Alex and Addison) or my husband as my mum and dad will be travelling with the twins and I."
Mrs Rosuck said the $200,000 did not include the one hour per day per child of post op therapy for an additional six months. One hour of therapy costs $180 per child.
However she said Aussie Kidz Charity, based at Fortitude Valley, had kickstarted the fundraiser by donating almost $20,000 for braces and equipment post op.
Mrs Rosuck said the boys had benefited in the past 12 months from having their own Mollii suits (garments with electrotherapy) which help reduce the spasticity in their legs and arms.
The suits cost $15,000 each and the family was able to buy two late last year with help from the community and local Lions clubs.
"They (the suits) have made an amazing difference," Mrs Rosuck said.
"Both boys have not needed medication for the pain the spasticity causes or the pain of their muscles growing and developing.
"Recently they were so sick and we didn't use the suits for two weeks. At the end of the two weeks we really noticed a difference and could feel how tight their leg muscles were.
"They could no longer use their legs without them saying they were hurting."
Mrs Rosuck said the boys also had regular therapy sessions.
"We attend weekly physical therapy, fortnightly occupational therapy and do three to four intensive blocks a year.
"Each intensive block includes three hours of therapy a day for three weeks. We've just finished an intensive block at Napa in Sydney.
"We also do laser therapy every other day and essential oils daily. Early intervention through intensive therapy is having amazing results for kids with Cerebral Palsy."
The Rosuck family is being supported in their fundraising by a group of local parents.
Carlie Allen-Baker said their children went to school together and they had known the twins since birth.
"Sharon has never really asked for help for anything with the boys and she takes everything in her stride," Mrs Allen-Baker said.
"You would never feel sorry for her because if those boys were to be born to anyone it would be to Sharon and Daniel.
"They are willing to do everything they can to get these boys to walk and when this opportunity came up for them to have this surgery it was a no-brainer to help them.
"If I had the cash I'd give it to them. We just want to help her as best we can.
"They're a good family, particularly Sharon's parents who help as well. They're a beautiful tight knit family."
A number of events have been organised to raise funds for the Rosuck family, including a Corporate Golf Day at Virginia Golf Club on Friday, November 15 and a Family Fun Day at Bracken Ridge Central Lions Club's miniature steam train day, McPherson Park, Bracken Ridge on Sunday, November 24.
Bracken Ridge Central Lions Club president Jason Sutton said members were more than happy to help the family.
"As a club we had helped provide financial support to the family in purchasing the boys' Mollii suits," Mr Sutton said.
"Lions are all about helping those in need and for the Bracken Ridge Lions Club our local community is always front of mind when we look for people or groups who need support.
"When the Rosuck family reached out to tell of this amazing life-changing surgery we thought of the best possible way that we, as a club, could help contribute.
"The Family Train Day is the obvious choice. The day will be simply amazing and we look forward to supporting the family financially, with all proceeds from the day going directly to them."
Mrs Rosuck said they were overwhelmed by the response from the community.
"It's truly inspirational for strangers to step in and provide our boys with an opportunity we can no longer afford," she said.
"It gives me faith in humanity again and, even though these people don't know us personally, they should know that they are positively impacting Ben and William's quality of life and our family's lives."
You can follow the family's journey on Facebook at 'Ben & William's Wish to Walk'.