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SMA Australia

SMA AUSTRALIA

Phone: (03) 9796 5744

exp chrisI would like to introduce myself. My name is Christopher Kessaris and I am 24 years old. I was diagnosed at 15 months old with Spinal Muscular Atrophy type 2 by Professor Andrew Kornberg at the Royal Children’s Hospital in Melbourne. At the time of diagnosis, my parents Irene and Spiros and the rest of my family were totally devastated by the news, and we were given no hope for any treatments for the disease.

Since being diagnosed my family and I have been hoping for a treatment as every time we visited by doctor our first question was: Is there any treatment? Have you heard anything doctor? And the answer was always, there is nothing. Throughout my life there have been several adjustments that have had to be made by my family in regards to my special needs, as well as many obstacles that I had to overcome throughout my schooling and social life.

Regardless of any obstacles that I faced throughout life, there were many supportive people that helped me, whether that was family, friends, doctors, or people in the education system. I needed accommodations at school for integration aids to assist me with anything physical such as carrying books, toileting, or getting my lunch out for me. Schools were happy to build ramps for me and made sure all buildings were accessible. Extra time was made available for me during examinations, as I was unable to write quickly enough due to my muscle weakness, and a laptop was provided so that I could type any essays I had to do.

During my life, I have faced many medical challenges. I have had 3 cases of pneumonia to date, which is quite serious and can be deadly for someone with SMA. I was in the intensive care unit for an entire month, my lung collapsing twice, and on the strongest of meds to keep me alive. I also used to have asthma, and have had surgery on my spine to treat the scoliosis that people with SMA suffer from.

In terms of the physical difficulties and challenges I face daily, it would be impossible for me to list every single thing I have difficulty doing that a non-sufferer of SMA would just take for granted, but I can try to list those which Spinraza would hopefully help alleviate. I am unable to lift my hands to my head meaning it is impossible for me to comb my hair without assistance, brush my teeth, eat things like soup or rice which require a spoon, or even scratch the top of my head! Things like this may seem trivial to the average person, but regaining some motor function with this drug will allow me not only to do these things but to give myself a sense of confidence and accomplishment. Things like reaching for a glass of water, or picking up things off the floor using a pick up stick would all become possibilities for me if I am allowed this medication. Finally, it would alleviate the demand on the healthcare system, as I would not need to extraordinary mount of government funding required each year for carers to be present 24/7 to do these tasks for me.

My social life has also been impacted by my condition. Needing to depend on someone to take me to places limited the chances I got growing up to spend time with others my age. I was unable to have sleepovers as a child, as there would need to be someone to look after me during the night. School camps were difficult to attend, as you can imagine, and so I often missed out. If somewhere was not wheelchair accessible, for example a bar or club, I was unable to go there. This would all impact my mental health and hamper my social confidence.

Albeit having faced all of these challenges, I never gave up. I excelled academically, completing my high school studies and gaining a scholarship to the University of Melbourne to do my Bachelor of Commerce which I have now graduated with. In terms of my social life, I have knocked down many barriers, refusing to allow my disability to limit me making things work, going out often with friends, coming home late at night like any normal 24 year old would do. My friends have always been very supportive of my condition and have always accommodated me well. I love going out for dinner, to the movies, to clubs, to concerts. I go to sporting events regularly; to watch the soccer and football. I have even travelled interstate for certain events.

As you can imagine, for my entire life, my entire family and I have always lived with the hope of one day hearing about a treatment for sufferers of SMA. Through my doctor, Andrew Kornberg, we found out about Spinraza. We were delighted to hear the news and were waiting for the moment to be told that we would get access to it. Upon my last visit to my neurologist, which was in February of this year, we were told that news would be announced that the medication would be accepted by the government. With great anticipation, we waited for the announcement to be made by the Australian government, that it would be available to all sufferers. With great disappointment the announcement was made and the medication that we were waiting for so many years was not going to be made available for me, simply because I was an adult. I felt empty, and devastated that this was the case, as I have been a sufferer of this disease for my entire life, and to be told that I cannot have the medication is, in my opinion, discrimination.

I hope that in the near future, adults like me will have access to the drug, as I believe that we are all deserving of a better future, especially when we as adults have been through so much already.