Posted - February 2013 in Living with HSP - Management & Treatment News
A participant’s view
HSP community member Terina from Queensland had two of her children participating in the now completed gait study in Melbourne. Here is their story.
“I remember first seeing the article about the Brooke’s research in Melbourne, and thought how exciting it was that there was more research into HSP. We have such a strong family history of HSP, but had no idea until my brother and I both had girls that had the same walking pattern. My brother is in a chair, and Mum and Dad were told that his condition was from lack of oxygen at birth. We now know that we have HSP, but it was never picked up in me as a child. I have noticed a lot of changes for me as I’m getting older – the back pain would be the worst, and my balance.
By the age of 2 years I knew that something was wrong with my daughter Taylor. Taylor is now 19 years old and is nearly finished her 2nd year of uni studying to be a teacher. Taylor has also worked part time at McDonalds since the age of 14 years. Taylor is a super star. It took a few years for the first diagnosis, and there have been many tears over the years, watching your babies go through all that they do, not just the doctor, physio, OT appointments, but being a child with a physical disability is no easy journey, human nature is to stare and comment on what we see as different. This is so hurtful. My youngest daughter Emma said to me recently, it hurts more when a mummy has something to say, as that is not what mummys are suppose to do. I say to the kids it’s just like you might stare at the boy/girl who can play soccer really well, that boy/girl that you think is cute, the lady/man with the big bottom, (that got some laughs!) and also they got it. “I see mummy, but it still hurts when I hear what they say”, “and it will hurt, but lets look at all the amazing things about you. You are all so strong, you are a great cricket player and amazing reader, you have so many friends and you are so beautiful…”
The children also say to me it’s hard not being able to dance like the other kids at the school disco, due to balance and the fear of falling over in front of all your peers. As a family we focus on all of the positive and for the kids the hospital appointments are a negative, and for me too, as there is never anything positive, it is always that the condition is getting worse, that there will need to be surgery in the near future, to try and slow down the process, so whenever we go to an appointment and there are a lot, we have a treat. It may be as simple as McDonalds on the way home, to a full shopping day of looking only in the shops that the children want to look in and to buy books, toys all sorts of wonderful treats….some days it is mini golf, the list grows all the time….
When I received the phone call to see if we could come to Melbourne to be a part of Brooke’s research it was yes, yes, wow any research is a blessing to my ears. But to the children, another appointment is not so great, so let’s turn it into what the kids would think was a positive, a holiday to Melbourne, their first plane flight. My pitch – we have this wonderful opportunity to go to Melbourne and fingers crossed find out some new information to help find a cure for HSP. We can go to the zoo and you get to go on a plane. Their faces lit up and the count down was on, off to Melbourne we go….
The children were shocked at the size of Melbourne university and Em said the best and biggest uni ever. Brooke was lovely and very inviting. She was patient with the children, we did have a few delays but to be expected. We are looking forward to seeing the other results, staying very positive that we will find a cure soon…
Now for Zac’s view on our Melbourne experience:
Zac 11 years
“I didn’t really like having the 3d Gait as it hurts when they take the tape off, and I didn’t like having to have my shirt pulled up. The good things were going on a plane for the first time and having a holiday…”
Now Emma’s view:
Emma 10 years
I didn’t like the 3d lab at all. It hurts so much when they take all the balls off and it took a really long time. I didn’t like all the people looking at me when I didn’t have my shirt down. It makes me feel uncomfortable when it’s around people I don’t know, but I did think the plane ride was spectacular and it was amazing that we were in the clouds and so high up. We got to experience Melbourne and the zoo is amazing, I really enjoyed it.