Brooke was born on December 2nd 1997.  In January 1999, her parents, Sue and Tom started to become concerned that Brooke was not developing and meeting her milestones.  Whilst both their older children had walked and talked before 12 months of age, Brooke was showing no signs of achieving this and so after many Doctors appointments in May 1998 they were told that Brooke had a form of Cerebral Palsy known as Ataxia, which affected her balance and caused her to fall over whenever she stood up, and that she also had a severe form of dyspraxia which would mean she would never be able to speak.  The medical team treating her were concerned that she did not have any brain damage that could explain her condition, however a regime of physio, speech and occupational therapy was started and Brooke was taught to communicate using a multi-level communication book, an electronic communication device, sign and keyword gesture.

Lots of hard work in learning to communicate, walk and balance, and by 4 years old Brooke was able to walk independently and communicate with her friends, joining her peers in mainstream kindergarten and then primary school.  Things were looking positive for her.

Unfortunately at age 9, Brooke and her family were to learn over a period of several months Brooke’s exact diagnosis.  After noticing that Brooke’s spine had suddenly developed a severe curvature, that her feet and hands were turning inwards, Sue and Tom were told that Brooke had an extremely rare condition known as Early Onset Generalized Primary Torsion Dystonia.  This condition is usually a genetic condition, however in Brooke’s case there was no known reason for her developing this and no there is no other child who has like symptoms.  She is a one in a million case, it is extremely rare and is degenerative.

Within a matter of months, Brooke lost the ability to walk independently, her body racked with painful contortions and constant shaking, her only relief from the condition when she fell asleep.  Primary Torsion Dystonia is degenerative, there is no known cure and it affects every facet of Brooke’s life and body.  Brooke has the severest form of the disease and there is no part of her body that is not affected by it, from her face to her feet.  Over the past four years she has endured endless trials of drugs in an attempt to try and stop the progression of the disease.  She has had her highs as some of the drugs have given her short term relief from the disease and some very bad lows as once again the Dystonia has reasserted its control over her body and life, but all through this she persevered, getting up each day, putting her walker on the back of her motorised scooter, communication device and laptop in her bag and going off to school.   Never once did she give up playing her beloved baseball even if it just meant going up to bat with her brother holding her body to support her, just being part of life kept her going.

In May, 2010 Brooke was implanted with an intrathecal baclofen pump in an attempt to reverse some of the effects of the Dystonia.  No-one knew if this treatment would work for her, however it was a chance that had to be taken to give some of her life back free from the effects of the disease, and whilst it has had a significant impact on controlling some areas of the disease as Brooke approaches puberty it is she is once again beginning to slowly go backwards.

For Brooke the shadow of Dystonia and its effect is never far away and the Baclofen pump is only a temporary measure.  Some days she can walk independently, some not, that is the nature of Dystonia, no two days are the same for sufferers.  Every day she wakes up is different, with a different set of challenges to deal with.  She needs a full time aide at school to help her access the curriculum and is dependent on others to assist her throughout the day including bathing, toileting, dressing and accessing the curriculum at secondary school.

Don’t forget you can help Brooke out by donating to her cause at Brooke’s My Cause page.