Anatoia: One in 500
When 7-year-old Anatoia Gray had a massive seizure in February at her family home near Nelson, no-one could predict the devastating news that would follow.
The seizure was so severe Anatoia was airlifted to hospital and after a number of tests she was diagnosed with Alexander disease, a rare neurological condition, that is progressive and fatal.
There is no standard course of treatment and no cure.
The grim prognosis has shattered Anatoia’s family. While her mother Amee Gray said the medical team at Nelson Hospital had been truly amazing, they felt isolated by the lack of knowledge available in New Zealand, due to the disease’s rarity.
Anatoia had symptoms of the disease for many years.
‘‘We were told that she had autism and global developmental delay but it still didn’t make sense. It all fits into place now.’’
With no other cases currently in New Zealand and only 500 people worldwide diagnosed since 1949, the family is travelling to the United States in August for the Alexander Disease Family Conference. While there they will meet doctors and researchers who specialise in the disease.
Making contact with other affected families will also be a huge support for the family.
‘‘This will give us an understanding of what to expect and how to care properly for Anatoia as the disease progresses.’’
Following the heartbreaking diagnosis Gray said the family had shut themselves away for a month trying come to grips with what they were told.
‘‘There is no fix, there is nothing we can do other than support Anatoia. There is no hope, and that feels very wrong, to have no hope.
‘‘Alexander disease is degenerative, slowly she will lose her ability to walk, to talk and to swallow. She’ll lose everything.
‘‘I couldn’t face anybody, I just needed to be in our own little world. After that I wanted to know more, I needed to know more than what we had been told.’’
Gray is taking Anatoia to hydrotherapy, speech therapy and Riding for the Disabled in an effort to improve her quality of life, and to maintain her mobility which is already affected by the disease.
The small Dovedale community has rallied around and are busy fundraising to help the family through what will be a very difficult future.
‘‘Our whole world has just been flipped, but Anatoia’s school and our community have been amazing, the kindness of people we know and complete strangers has just blown us away.’’
Travel costs have put the family under financial pressure. Gray has to bring Anatoia into Nelson numerous times each week. With the trip to the conference in Wisconsin also coming up Gray said they really appreciated the support they had been offered.
‘‘I want to thank everyone, it’s hard to feel like we can thank them properly but what they are doing means so much, it has eased some of the pressure we are under.’’
Despite the mounting pressures Gray is working hard to make sure Anatoia gets to experience as much as possible.
‘‘She loves her weekly horse riding lessons so much that her grandad has built stables at our home.’’
They hope to get Anatoia her own horse soon. ‘‘She is so happy when she is riding, smiling the entire time, there is a feeling of freedom when you watch her.’’