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That’s Life Magazine Issue 22, June 5th 2013        

Written by: Rebecca Spokes, Albury NSW

 

ayisha.jpgWith her pigtails tied in pink ribbon, my little girl radiates happiness. And as Ayisha, six, toddles along in her school uniform, you would never know there is a secret weapon helping her stand. Even though it’s invisible, the impact is huge.

When my husband Brett, 39, and I discovered I was expecting, we were overjoyed. For two long years we’d been trying for a bub.Hearing our baby’s heartbeat getting stronger at every scan was absolutely remarkable, and finally our bundle of joy was born, weighing 3.6 kilos.

Holding Ayisha in my arms for the first time, with her tuft of brown hair and blue eyes, I had to wonder how we’d got so lucky. She looked like a tiny doll – perfect.

When Brett and I took her home we were thrilled to start this new chapter in our lives. Ayisha was such a happy baby. She slept right through the night and loved to giggle. But when she was six months, I noticed she was struggling to sit up. She played with her blocks in the lounge room, but as she reached for a big red cube, she lost her balance and toppled over. It’s normal for babies to develop at their own pace, I thought to myself. But as an Occupational Therapist I couldn’t help but be concerned. Seeing a physiotherapist, he explained that Ayisha did have low muscle tone. “It’s nothing serious”, he assured me, smiling. Still, I kept a close eye on her development to make sure she was reaching all her milestones.

When she was a year old, Ayisha was concentrating when I read books to her, babbling away, and loved to laugh. But she wasn’t crawling and still had difficulty supporting her own body weight. I was sure something wasn’t right. Heading to the doctor, I explained what was happening and he told me she would need further tests.“It’s possible she’s suffering from cerebral palsy”, he said to me, explaining it’s a condition that causes physial disabilities. “My poor baby”, I stammered. With Brett away at work, I broke down alone. Would our girl lead a normal life? Was she in pain? Would she ever walk? My head was filled with questions, but I vowed to stay positive until we had a final diagnosis.

Over the next six months doctors continued monitoring our girl. But soon Ayisha’s joints and muscles were so frail she could hardly move. One day we were lying on the floor together. “Come to Mummy”, I smiled, holding out her favourite toy. Ayisha desperately wanted to. But as she pushed herself upwards, her little hands and legs collapsed beneath her. Why? Brett and I felt helpless.

With still no diagnosis, doctors referred us to Kurrajong Early Childhood Intervention Service located in Wagga Wagga, NSW. The organisation suports kids with developmental delays or disabilities, and it provided us with a real ray of hope. “We have something that might help her to move”, a therapist said. “It’s been very successful in the past”. When she explained it was a special “TheraTogs” body suit, I was intrigued. How would it work? The suit is made from rubber and consists of a pair of shorts and a vest. The  therapist said it was designed to stabilise Ayisha’s joints and help strengthen her different muscle groups.

Slipping it onto my girl, I could instantly see it working its magic. For the first time, I saw her sitting up without tumbling over. “That’s amazing!” I gasped in disbelief, and I was absolutely thrilled when the therapist said we could take it home with us.

For the next three months, Ayisha wore her secret weapon underneath her clothes for 12 hours a day. When I spotted here crawling across the carpet for the first time, I thought my heart might burst with pride.

Soon after, something even better happened. Gripping a special walking frame, Ayisha placed one foot in front of the other. She was walking at last! “Good girl” I cried. Therewasn’t a dry eye in the house. Of course, things were hard at times. I would find Ayisha rubbing her elbows and knees after a long day because they hurt, and in the warm weather it was too hot to wear the suit. But it had been a godsend. The only problem was, it didn’t belong to us and it would need to be replaced as Ayisha grew. A new suit cost $1000. “Where will we find the money?” I worried. “We’ll figure something out”, Brett reassured me with a smile.

We were put in touch with Variety, the children’s charity which supports disadvantaged and sick kids, as well as those with special needs. After hearing our story they offered to fund a new suit. What an amazing gift! But, all this time, we’d never had a definite diagnosis for what was causing Ayisha’s problems. The answer finally came when she was two, after doctors ran tests to examine her flexibility, sensitivity to bruising and the elasticity of her skin. They ran special tests on me too. “You are both suffering from joint hypermobility syndrome”, the doctor revealed, explaining that it’s a rare connective tissue disorder which causes loose ligaments and unstable joints.

Suddenly it all made sense. Looking back, even though I had developed well as a child, I suffered from joint pain. I couldn’t believe I’d been living with the illness for 28 years and not known it! Ayisha had inherited a more severe form of the condition, but with the right support and care I knew that she would be ok. Armed with her special suit, nothing could stop her. And I was right.

A year later Ayisha was walking without a frame. Since then we’ve welcomed another daughter, Jorja, now three. While there is a chance she may also have inherited the condition, she’s developing well.

Today, Ayisha, now six, loves being a big sister and just started school this year. Of course she gets tired sometimes, and she occasionally uses a wheelchair, but she also loves to jump rope and run around the playground with her friends.

Our little girl has a bright future – and it’s all thanks to her special suit!