I was asked this very good question today and I was not sure what to say, I have never been asked for how it affects her, great question and I have been pondering it since.
HSP affects Annie in so many obvious visual ways but also many ways that are hidden, the way she walks and her balance are only two parts to the puzzle. Because of these two things Annie cant carry her own tray without the risk of falling, Annie still uses a walker in school because she falls too much without one. Annie cannot walk in a straight line with other kids her age because when they stop it is like a bowling ball effect. Annie needs to hold on, sometimes its other people she grabs and sometimes they dont want her to and step away not realizing....
Annie has struggled in school and still struggles because of the medication (she used to take 60 mg of baclofen -a muscle relaxer every day from 3-6 years old) which made her very sleepy and she has a condition called strabismus (weak eye muscles) that make it hard for her to accommodate (focus) her eyes on words when she is reading.
Annie slept all the time. She missed out on life, was often too tired to do fun things and literally slept through most of kindergarten.
Annie used to cry in the car, it did not matter if we were going five minutes apart or an hour, she cried from the time we got in until the time we got out, everywhere we went, what I did not know was that riding in the car is painful for her. We do not travel much because it is hard on Annie's legs to sit in the car for so long. We have tried everything from propping her legs up to letting her lay across the seat. The only way she is comfortable is no car seat laying across the back seat and that is not safe so for now we deal with the complaints, "Are we there yet's", "My feet hurt" and occasional tears if its a long ride.
Annie used to not realize she was different but lately kids ask her more what is wrong with her legs and she does not like to be asked, we are still working on this, I do not think it is malicious but she is going through a phase and accepting herself as most pre-tween girls are.
Annie is often excluded from birthday parties and other events because people do not want to plan around her physical capabilities and is often not able to participate in summer camps (with the exception of Gull Point- shout out cuz they rock and are super inclusive!)
Those are just all the known things.......
There are the unmentionables, the things we don't talk about often, the possibilities.
Annie has hereditary spastic paraplegia, but she has type 56. This type is even more rare than the disease itself, I have met 7 other people online with the same type from all over the world. we are in a group together, each child is unique and suffers different challenges. The research on type 56 states that they "believe" it could be progressive. but they do not have enough evidence to confirm or know when. Annie's "progressive" could have been from 2-6? we do not know, she seemed to gradually get worse and then stabilize but there is the possibility that she could get worse.
I share this truth so you understand, we just want to give our child the best life, just like you do for your child, her best chance at that best life is right there almost in our reach and we are working hard to get her there.
SO thank you, to everyone, all the donators, vendors, to all the people who have offered advice, whether its $5 or putting up a flyer and spreading the word, we appreciate anything you have to offer us.