{"id":3668,"date":"2013-12-02T21:59:03","date_gmt":"2013-12-02T10:59:03","guid":{"rendered":"https:\/\/blogs.rch.org.au\/news\/?p=3668"},"modified":"2015-04-29T12:07:14","modified_gmt":"2015-04-29T02:07:14","slug":"maya-wont-let-her-disability-define-her","status":"publish","type":"post","link":"https:\/\/blogs.rch.org.au\/news\/maya-wont-let-her-disability-define-her\/","title":{"rendered":"Maya won’t let her disability define her"},"content":{"rendered":"
\"Maya1\"<\/a>
Maya (centre) on holiday with her siblings.<\/figcaption><\/figure>\n

Today is International Day of People with Disability, it\u2019s a United Nations sanctioned day that aims to promote understanding and encourage support of people with disability.<\/em><\/p>\n

For 14-year-old Maya, having a disability will never define her, she won\u2019t allow it to. Since she was just eight-weeks-old Maya has had T3 paralysis, meaning she has no movement from her chest down. Maya has faced many challenges in life, including the devastation of losing friends in the 2009 Black Saturday bushfires that tore through her hometown of Kinglake, the same week she was preparing for one of many major surgeries.<\/p>\n

Despite everything, this courageous teenager has hopes and dreams for her future that don\u2019t leave room for disability. She is positive and focused on what she can do instead of dwelling on the things she can\u2019t.<\/p>\n

The day after Maya was born a nurse at the hospital noticed she had swollen feet and she was sent away for tests but they all came back clear. Her parents Lucy and Peter were relieved and couldn\u2019t wait to take their new baby girl home.<\/p>\n

After a few weeks the Maternal and Child Health Nurse<\/a> told Lucy that Maya wasn\u2019t putting on weight and that she seemed to be a very quiet baby.<\/p>\n

\u201cMaya was my first baby so I didn\u2019t know what to expect, but I was worried that she wasn\u2019t putting on weight, and then she started to lose weight and the Maternal and Child Health Nurse advised us to take her in to the\u00a0Emergency\u00a0Department<\/a> at The Royal Children\u2019s Hospital (RCH),\u201d said Lucy.<\/p>\n

\"Maya<\/a>\u201cThe doctors seemed to know something was wrong right away and they admitted her. We were seen by the neurologist as soon as we got to the ward and Maya was sent for more tests. An MRI<\/a> showed she had cysts on her spinal cord, which had damaged nerves in her spinal column. I think I was still in denial at that point, in some ways the diagnosis validated our concerns but I still didn\u2019t want to believe it was true,\u201d she said.<\/p>\n

\u201cMaya had already lost the use of her right arm and we were told that she would be paralysed as a result of the cysts, and that she had to have neurosurgery<\/a> immediately. She was only eight-weeks-old at the time,\u201d said Lucy.<\/p>\n

\u201cSeeing her in recovery after that first surgery was tough. There were so many tubes and machines connected to her and she was so tiny. I think it was then that it really hit me,\u201d she said.<\/p>\n

Just two weeks later Maya had to go back in for a second major surgery to remove the cysts from her spinal cord because some had resurfaced after the first surgery. After that she regained the use of her left arm but the nerves in her right arm were too damaged to repair.<\/p>\n

Ever since those first surgeries, Maya has spent much of her life in an out of the RCH. The nerve damage to her spinal cord has weakened her chest muscles, affecting her breathing and leading to numerous chest infections and long stays in intensive care<\/a>. Maya also lived with a feeding tube for six years and has had three major spinal surgeries<\/a> with long recoveries to correct severe scoliosis (a side spinal curve) and kyphosis (a forward spinal curve).<\/p>\n

\u201cMaya\u2019s health has such a huge impact on how we function as a family, when she\u2019s okay we are too but when she\u2019s going through a hard time we go through it with her,\u201d said Lucy.<\/p>\n

\"Maya2\"<\/a>
During one of Maya’s many admissions at the RCH<\/figcaption><\/figure>\n

\u201cMaya\u2019s younger siblings understand what it means to be unwell, they know hospital life all too well as they have grown up at the RCH with Maya. My twins even learnt to walk at the RCH, which happened during one of Maya\u2019s stays in intensive care. They all have such a good insight into and understanding of what she goes through.\u201d<\/p>\n

\u201cMaya amazes us every day; she is extremely strong and takes everything in her stride. She watches the news and sees other people in tough situations and she feels so much for them, but she doesn\u2019t see herself as being different to anyone else,\u201d she said.<\/p>\n

Maya is focused on a bright future; she can\u2019t wait to learn how to drive and is already planning overseas trips for when she finishes school. For now, she loves just being a teenager, enjoying her time with friends, rehearsing for the upcoming school play and going on cycling adventures with her family, something she can now do after learning hand cycling during rehabilitation<\/a> at the RCH.<\/p>\n

\"Maya3\"<\/a>Her independence has grown significantly since becoming involved in rehabilitation programs \u2013 a private program called \u2018Walk On<\/a>\u2019 and the more widely available Victorian Paediatric Rehabilitation Service<\/a>. Lucy and Peter are constantly amazed by their eldest daughter, who they say is the director of the family<\/p>\n

\u201cWe always wanted to make sure Maya felt accepted and it means everything to know that she doesn’t see herself as having a disability, she doesn’t want it to define her. She\u2019s just Maya and we couldn’t be prouder of her.\u201d<\/p>\n","protected":false},"excerpt":{"rendered":"

For 14-year-old Maya, having a disability will never define her, she won\u2019t allow it to.<\/p>\n","protected":false},"author":41,"featured_media":0,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[6],"tags":[],"class_list":["post-3668","post","type-post","status-publish","format-standard","hentry","category-in-the-news"],"acf":[],"_links":{"self":[{"href":"https:\/\/blogs.rch.org.au\/news\/wp-json\/wp\/v2\/posts\/3668","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/blogs.rch.org.au\/news\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/blogs.rch.org.au\/news\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/blogs.rch.org.au\/news\/wp-json\/wp\/v2\/users\/41"}],"replies":[{"embeddable":true,"href":"https:\/\/blogs.rch.org.au\/news\/wp-json\/wp\/v2\/comments?post=3668"}],"version-history":[{"count":25,"href":"https:\/\/blogs.rch.org.au\/news\/wp-json\/wp\/v2\/posts\/3668\/revisions"}],"predecessor-version":[{"id":3714,"href":"https:\/\/blogs.rch.org.au\/news\/wp-json\/wp\/v2\/posts\/3668\/revisions\/3714"}],"wp:attachment":[{"href":"https:\/\/blogs.rch.org.au\/news\/wp-json\/wp\/v2\/media?parent=3668"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/blogs.rch.org.au\/news\/wp-json\/wp\/v2\/categories?post=3668"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/blogs.rch.org.au\/news\/wp-json\/wp\/v2\/tags?post=3668"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}