Can-Do-Ability: Answers and Solutions from my personal experiences of living with a disability

Get ConnecTeD and Stay ConnecTeD...

28 Sep 2010You are invited to a ball..... The ball’s theme is ‘Live. And Let Live’ Bond with ConnecTeD, and it is being held on the 16th of October to support the children and young adolescents with rare genetic the Connective Tissue Dysplasia. The ConnecTeD for Kids organisation gives a huge amount of support through the Connective Tissue Dysplasia (CTD) Clinic, at The Children’s Hospital at Westmead, in Sydney.

This clinic is very near and dear to my heart as they have helped many children who are born with Osteogenesis Imperfecta or ‘Brittle Bones’, like myself, get the most out of their lives. They also help with other Connective Tissue disorders such as: Arthrogryposis, Ehlers-Danlos Syndrome and familial hypermobility, Marfan Syndrome, Mucopolysaccharidoses, Osteochondrodysplasias and Bone dysplasias/Chondrodysplasias, Short Stature.

Even as these names are very long and hard to pronounce, they are also rare and serious connective tissue disorders that affect so many families. Whilst you may not have heard of many or in fact any of these disorders, they can have some heartbreaking effects on young lives and families, and as a result, babies and children have fragile bones that fracture frequently, fragile skin tissue, looseness or tightness of skin, excessive movement of the joints or very little joint movement, extremely tall stature or short stature plus many more rare disorders that can significantly shorten lives.

The (CTD) Clinic helps families with Diagnosis and Treatment, such as specialised drug therapies, Physio Therapy, equipment that assists with mobility, Occupational Therapy, Genetic Metabolic Medicine, Endocrinology, Rehabilitation, and includes Research into many of the 600 connective tissue dysplasias.

When I was 12, I was started on a trial called Pamidronate, this was a drug given to me intravenously once a month at Westmead Childrens Hospital. It took about 3 hours of me sitting in a chair, waiting for my monthly dose to go through my veins. This treatment was provided to help strengthen bone density (thickness of bones). I was given Pamidronate for about 8 years and it definitely helped me so much. When I was younger, I used to fracture on average, every 6 weeks, but since I was started on Pamidronate, my fractures slowed right down and now I go years in between breaking a bone.

This is just one of the ways the CTD Clinic helps young lives with rare disorders. They are always looking for generous donations to help fund important expensive items such as: Horseshoe Headpads, (these help to keep fragile babies heads in good shape), Soft Casting, (which will help children to swim in a cast after a break or surgery), specialised walking frames and wages to cover more medical fellows. Physio Therapist's and Occupational Therapist's time in the clinic. All of these much needed items and medical personnel come close to a massive $900,000. Some of these wishes are granted, but some are still urgently needed. To view the CTD Clinic’s wish list, click here - www.connectedforkids.org.au/wish-list

ConnecTeD for Kids organisation is holding the Live. And Let Live Bond With ConnecTeD Ball on the 16th October at 7pm, at the Grand Pavilion, Rosehill Racecourse. It is a Black Tie event and the tickets are $130.00 each. What will you get for that? A 3 course meal and drinks, live entertainment, auctions, a raffle and heaps of fun activities on the night! All in all, it will be great fun for a great cause. If you are interested in going, please visit - www.connectedforkids.org.au/ball2010 or call Renee Veliscek-Plisek on 0418163458 or Peter Foxall on 0403705800. I hope to see you there!

To learn more about the Connective Tissue Dysplasia Clinic, click here - www.connectedforkids.org.au

*** Below, I have included:
-This years invitation - Live. And Let Live
- The Horeshoe Headpad
- Soft Casting

Get ConnecTeD and Stay ConnecTeD...


Get ConnecTeD and Stay ConnecTeD...


Get ConnecTeD and Stay ConnecTeD...



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