04/07/2015
Marcus and Joshua

Identical twins Marcus and Joshua have been part of the Can:Do 4Kids family since they were less than a year old. As the boys approach their fourth birthdays in May, their Mum Kerrie wants to share an update on how far they’ve come thanks to the support of generous people like you…

“Parents of healthy kids rarely stop to think about the challenges that some children face. I don’t mean that as a criticism at all – until four years ago, I was one of those parents. I sailed through my first pregnancy, with my eldest son, Damian, with no complications. My husband Milan and I were overjoyed with our new addition – a healthy baby boy.

My second pregnancy was similarly unremarkable - apart from the surprise of discovering I was expecting twins! Nothing could have prepared me for what lay ahead.

Our worlds changed when the twins were born. We were told our tiny babies had Stickler Syndrome - a group of hereditary conditions characterised by severe eye abnormalities, hearing loss and joint problems.  We were told these eye abnormalities could cause anything from impaired vision to blindness.

Both boys had cleft palates – an opening in the roof of the mouth – and needed surgery. We learnt that this was a common characteristic of Stickler Syndrome, due to underdeveloped bones in the middle of the face, which can also cause problems with feeding.

Full body scans were also needed, which revealed skeletal abnormalities including fused necks. It was terrifying reading about Stickler’s. Milan and I feared that Marcus and Joshua would be forced to live their lives in a bubble.

The biggest hurdle was yet to come. The day we was told about their vision problems was the worst day of my life. I felt like we’d barely had time to get over everything else when eye tests showed their fields of vision only extended to an arm’s length. The boys were still so tiny – it just didn’t seem fair. It started to feel like we were on a rollercoaster – at four months old we were told both boys had hearing impairments; Marcus’ mild, Joshua’s severe.

We tried everything we could do to support the boys. Contact lenses were a total nightmare - it was just too tricky, even their both their Dad and I patiently inserting each tiny lens. After a month of persisting, we decided to try glasses just before the boys’ first birthdays.

We thought glasses would be a breeze compared to contact lenses, but we were wrong. Joshua absolutely hated wearing his glasses and constantly took them off. Marcus wasn’t quite so bad, but he still didn’t love them. At less than a year old, the boys were just too young to understand what a difference they would make.

Slowly but surely, we persisted and eventually the boys got used to wearing them. The first time they realised how much more they could see was just incredible. I remember it so vividly. We were in a busy shopping centre and Marcus stopped trying to take his glasses off. It was like he had suddenly focussed and realised there was a big, colourful world out there of things to see. I snuck up behind Joshua and slipped his glasses on. Suddenly, he too could see!

Medical appointments have been a regular part of our lives since the boys were born, and it was the Women’s and Children’s Hospital who recommended Can:Do 4Kids. We went to a playgroup session and met Melissa, a Speech Pathologist. At two years old, the boys had no speech skills at all. As a mother of an older child, I was well aware that this was way behind ‘normal’ development. Through regular sessions with Melissa, the boys started to catch up.

To help us communicate I learnt some sign language – just the basic signs like ‘more’, ‘drink’, ‘eat’, ‘sleepy’ and ‘let’s go for a walk.’ Two years on the boys still both receive speech therapy. Marcus especially struggles to say certain letters, but they have come such a long way over the last two years. I’m very proud of them.

The boys now take part in SPOT sessions – a combination of Speech Pathology and Occupational Therapy within the same session. Can:Do 4Kids is one of the only organisations that offers this combination and it’s working really well for our family. These sessions focus on developing important skills, such as balancing or writing. The boys just love coming to Can:Do - they jump out of the car and rush inside to greet Lucy and Kathryn, their therapists.

Whilst those skills are coming along nicely, there are still major challenges. It seems that for every area that improves, another challenge crops up. For example, as the boys’ speech is coming on leaps and bounds, feeding has become a real struggle.  

Joshua is very fearful of eating food with certain textures, for example, he totally freaks out if something like custard touches his skin. It might sound silly but his fears go way beyond those of a typical fussy toddler. Both boys struggle to eat enough and I worry about them getting all their nutrients. Sometimes I can offer five different foods and they still won’t eat a bite.

Currently they eat a lot of very simple foods like bread and take iron tablets as meat in particular is a food that they struggle to chew. Even brushing their teeth is a nightmare – they just hate having anything in their mouths.

Luckily, speech therapist Kathryn is experienced in supporting feeding challenges. With Kathryn’s help, the boys are becoming more adventurous but I know we have a long road ahead. I can’t tell you how much I look forward to the day when I can prepare a meal and see my sons tuck in.

As the boys approach their fourth birthdays, our biggest focus is getting them ready for school. They start kindy in January and I’m determined that they will be at the same stage as their big brother when he started. The boys are so excited about kindy - I’m the total opposite!  I worry about how they’ll cope when I’m not there to help them – how will they open their lunchboxes? How will they be able to see if another child pulls their glasses off?

My biggest fears though are about their futures. Sticklers Syndrome affects individuals in different ways with age. I’ve read that arthritis may be experienced at an early age and hearing loss can become more significant, Will their issues affect their education, or work? Will they be able to drive?  I also worry about their children – there’s a 50% chance that they would pass on the genes that cause Stickler’s.

My worst fear is that the boys could become blind. It’s a real risk that their retinas could detach at any time. The idea that my babies might one day totally lose their vision is just so terrifying that I try and push that to the back of my mind. I pray that their vision doesn’t dramatically worsen with time, but as a mother I worry.

Our family calendar is filled with medical appointments and will continue to be for a long time yet. We have regular appointments with the fracture clinic to check on the boys’ ankles and knees, the spinal clinic to keep an eye on their necks and the cranial facial specialist as people with sticker’s are prone to issues with their teeth. These specialist visits will continue for another 15 years or so – until the boys stop growing.

In the meantime, I cannot thank the team at Can:Do 4Kids enough for their support. They really have made such a difference to the lives not only of Joshua and Marcus, but to our family. When your children are facing challenges with their health, having expert support is crucial. Whilst I thought I knew about feeding young children from my experience with Damian, the support that Kathryn is providing is invaluable.  

Meeting other parents at Can:Do 4Kids playgroups has been amazing. When the boys were tiny I had no time at all outside of our medical appointments and rarely met new people. It was just wonderful to develop a support network and have an opportunity to talk to other families facing similar situations.

It’s a sad reality that every day parents are told that their children have serious health conditions. To those families, I want to say that there’s light at the end of the tunnel. There is incredible support out there, like the team at Can:Do 4Kids, and you don’t need to do it alone. To everyone who enables Can:Do 4Kids to continue their work, thank you.

 

SHARE