Brooke is 14 years old and suffers from a very rare condition known as Early Onset Generalised Primary Torsion Dystonia. This condition results in sustained muscle contractions producing twisting and repetitive movements and abnormal postures and in Brooke’s case it is progressive and degenerative.

Over the past twelve months her condition has been deteriorating despite the very best efforts of the team of medical professionals working with her at the Royal Children’s Hospital in Melbourne, and she has now been hospitalized three times this year with life threatening Dystonic storms, where she has intense episodes of severe generalized dystonia that contorts and locks her body into painful postures.

Brooke has no control over her body for most of the day.  It has a life of its own; she cannot control her posture so doing some of the simplest things for her becomes a painful chore.  Speaking, walking, sitting, eating, drinking, all take a great effort because her brain does not co-operate and sends mixed messages to the muscles making them contort her into unusual positions.  The only time that Brooke gets any relief from the effects of this disorder is when she is asleep.

June 2012 – Brooke was admitted into hospital locked into this position. She could not straighten her legs & feet

Brooke desperately needs a surgical procedure known as Deep Brain Stimulation.  This surgery has been done many times on children with Dystonia overseas, but it has not been done in Australian on a child with Dystonia. The Royal Children’s Hospital can do this surgery for her, but to do it they need a piece of equipment called a stereotactic frame to enable the surgeons to position the electrodes with pin point accuracy.   Without this frame it is not possible to do the surgery and so we are seeking assistance to raise $50,000 to help purchase and donate this piece of equipment to the Children’s Hospital so that Brooke and other children like her in the future can benefit from it.  Fundraising to purchase this frame is the only way the operation can go ahead as all other funding sources/avenues have been exhausted.

It is with deep sadness that her Dad and I have watched Brooke go from a happy sports loving 14 year old kid who went to school each day and could walk and play all her sport in February this year, to now being wheelchair bound, her body constantly twisted and racked with painful contractions, not able to fully attend school because she is just too tired and weak from the effects of medication she must take to control her dystonia.

Today Brooke spends most of her time battling dystonia, and now dystonic storms, which lock her into unusual positions, because her brain is telling her muscles that this is normal.  If she tries to move out from this position, her legs and body flail and shake uncontrollably.  Brooke suffers from these storms now every week.

Brooke’s brain is telling her that she is lying straight here. She cannot move from this position.

We need to raise this money to not only help Brooke but also to help other kids who also need this equipment to help them. Without Deep Brain Stimulation the future is bleak for Brooke, this surgery offers her, her only hope.

Where to donate to help Brooke out!

We appreciate your assistance to help us achieve this surgery and would love to acknowledge your generous donation so please let us know by emailing us at Brookestar.dbs@gmail.com, with your name and address so that we can send a thank you and a receipt. Brooke’s nickname is “Brookestar” I think you will agree she is a “star”.

Thank you for taking the time to read this, Sue Kennedy, Appeal Manager