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SMA Australia

SMA AUSTRALIA

Phone: (03) 9796 5744

exp paulaMy name is Paula Busto, I have SMA type 3.

I was misdiagnosed when I was around 5 as having knock knees. I was made to wear splints at night that misaligned my knee caps. I remember being so angry and upset because they were so painful and uncomfortable. That went on for quite some time.
After that, in my pre teens I was made to do physical therapy. My dad was extremely abusive, so this gave him another opportunity to cause me pain and so would make me do the therapy to the point of torture.

My brother was diagnosed with SMA when he was around 3 so this prompted my mum to test me. I was 16 when finally probably diagnosed. I was still walking at this point and when I got the diagnosis I was told that by the time I was 30 I would be confined to a wheelchair, that I should not have kids or if I fell pregnant I could terminate the pregnancy. As a 16 year old this was extremely difficult to hear, and so between the abuse at home and my diagnosis I was emotionally in a very dark place. School was also difficult as I was teased for walking differently than others and could not join in with sports and other activities.

During my teens walking became very difficult, I was required to do a 30 minute walk home from school which was very painful and I was relieved when I got my license. By the time I was in my early 20’s, I could no longer get up from the floor or stand from chairs without arms including toilets, this limited where I could go and isolated me further. By the time I was 25 I could no longer drive and needed an electric wheelchair to go out. Walking inside was difficult but still doable at this point.

I had my daughter when I was 34. My pregnancy was normal but it caused me to lose a lot of my ability to move as I used my wheelchair all the way through for safety.
I now live with my amazing daughter Isabel, who will be 6 in August. I am a full time single parent. My daughter has Autism Level 1 (Aspergers).

I live in a modified home as I am confined to an electric wheelchair. The only assistance I receive is for cleaning floors and toilet once a week. I try to provide as "normal" a home as possible so I cook, clean and look after my daughter’s needs on my own. However doing these things always takes me twice the time it takes an able body and I sacrifice valuable time with my daughter as I am often tired, sore and a little cranky but having outside assistance distresses my daughter. I also do all this to keep my body moving for as long as I can, even though I am exhausted and in a lot of pain constantly.

Isolation is also a big problem for me, I am very limited in where I can take my daughter. Even places that have disabled access, do not have the toilet requirements that I need as I cannot stand up from a toilet seat that is not the correct height and slide transfers don’t work for me as I don’t have the upper body strength. This been a problem since I was 19 years old.

I take great pride in being self sufficient and am proud of myself at the end of the day.
I am also proud of my beautiful daughter who is learning how to read and is a talented artist who draws amazing horses and unicorns as this is her obsession. Isabel requires support and a structured day as she suffers from extreme anxiety, which can be physically demanding on me.

My wish for the future, is that Spinraza will alleviate some of my pain, give me more stamina and stop the progression. I want to be the mother that Isabel deserves and needs but without this medication I fear that my future will not allow that and instead will force me to need more and more assistance.