Pauline Maniskas

EVENT DETAILS

Start Date
18-11-2022
End Date
21-11-2022
Start Time
15:00
End Time
14:00
Registration Deadline
Event Type
Category
SMS
S.M.S. Camp
9926

(Prof Smith)

Smith-Magenis Syndrome is a rare medical condition and is clinically determined by a chromosome microdeletion due to a missing piece (deletion) on chromosome 17. The common features include self-injurious behaviours-head banging, hand biting, picking at skin, pulling off finger and toenail to name a few. There is a developmental delay, speech and language delay, and sleep disturbances. Prolonged tantrums & explosive outburst. destructive and aggressive behaviour are common occurrences.

These children may also have Infant feeding problems, and low muscle tone.  SMS children have fantastic long-term memories, very helpful natures, are electronic wizards, and are great huggers and smilers.  This program is usually held every 2 years with conjunction with world expert Prof Ann Smith (co -founder of SMS). She returns to Australia to update and give research results and advise on this condition.

It is held over 4 consecutive days (from Friday till Monday) and families with SMS children attend from all over Australia & New Zealand.

This is the only program of its type in the world and has been operating since 2003.

Camp Breakaway aims to celebrate the achievements of all SMS children and give them a chance to mix with other SMS children and families with shared lived experiences. This is an opportunity for families to bond and network and hear the latest research from Professor Ann Smith.

We create a nurturing and supportive environment where these families can enjoy a respite break together. It also provides siblings of SMS children a rare opportunity to talk with the other siblings in a similar situations.  Over the years a very strong network has evolved with the parents, Professor Ann Smith and Breakaway that has enriched and enhanced the lives of all.

We pamper the parents and children and provide “parents only time” whilst entertaining and caring for the SMS children and their siblings. This program receives no direct government funding. Funding is provided by a small number of selective competitive grants, philanthropic funding and a large amount of fund raising.

Given the rarity of SMS and the very high costs associated Camp Breakaway endevours to coordinate this program every 2-3 years.