Anisa’s Story

Scene one, take two So here is a picture of Anisa Mia Elder, who was born on Remembrance Day. So I have this cute little tiny baby, with this red hair out of nowhere who literally was the size of a phone book when she was born that just blows my mind she was that tiny. It’s kind of cold. Are you chilly? The first symptoms that we noticed with Anisa from a very, like in the very beginning was she snored. I don’t get that. Action. We are playing hide and go seek. Oh and this is my American girl. Overlooked symptoms may have been Anisa had clubbed feet. That’s not necessarily something that you see regularly with MPS1 not being able to move her arms as well so not your typical markers like reduced mental capacity or missing mile stones.

She didn’t miss mile stones. We had taken Anisa to a doctor at around the five or six month mark just because her snoring was getting worse as well as we had mentioned that her hip used to click, little items that we kind of had a grocery list for, but they were all easily explainable at that time. That’s kind of weird. No, I’ve got to hide, they’re gonna find me! MPS was never presented as a possibility before diagnosis. There was a time when Anisa was about nine months old where I think maternal intuition took over and I had placed Anisa down for a nap and I just kind of held on to the side of her crib and I sat there and I knew at that point in time that there was something not right and whatever it was, please give me an answer.

Uhm, and then shortly Thereafter we had a diagnosis. This is Anisa’s first set of casts, they were just these straight legged plaster cast that I actually still have the molds from in my closet somewhere. Do you remember this story Anisa? Anisa’s diagnosis came on in a very odd type of way. Anisa had been going up to Sick Kids for club foot treatment and we were graduating from her club foot program and we received a phone call the next day and it had been a radiologist in the club foot clinic department that noticed that her hips weren’t right and immediately called us two days later to say we needed to come up to Sick Kids Anisa was diagnosed positively with – do you know what the word is? Mucopolysaccharidosis Hurler-Scheie one.

Yes, uhm, Mucopolysaccharidosis, MPS I. MPS affects your life personally and professionally in many different ways. Professionally, attempting to find an employer who is open to the idea of their employee being off anywhere from 4 to 6 months a year; they’re not necessarily for me, it’s for making sure that we can attend to Anisa’s appointments, uhm. Yeah really, we have to go there a lot right? To Sick Kids. It’s okay. Although, it is a bit scary. Is it scary? It’s scary going to the hospital, its very scary. My first reaction when the doctor advised that they were not able to rule out MPS I I was with my family, my husband at the time, and my mother had come to join us, and I handed my daughter my one year old daughter, to my mother and I I left the room, I walked out. So that was tough, but uh, they tracked me down and gave me an apple juice and, and we were okay after that.

(Anisa giggles) It’s all good. To receive a diagnosis like that is uh, your world gets turned around very quickly, but uh, today, it’s, it’s okay. We were stuck with this image of what could be and looking at your healthy child that was healthy two minutes ago and then after diagnosis is, is somewhat different. The future for Anisa and MPS, I think it will be filled with make up dance, uh, a lot of fun, she is very active. She has lots of different activities. She’s, uh, part of cubs, she has three types of dance classes that she goes to, tutoring every week and I think that she will just continue to be as active as, as she can, and for whatever I can afford.

The future in MPS, specific to Anisa, that story has yet to be written. What do you think you would like to do in the future? Find a cure. Find a cure, find a cure for what? MPS MPS, International MPS Awareness Day. What I would like families to know, either newly diagnosed, or families that have been on this journey for a while is that it is not the end it is manageable. You can put them in a bubble, or you can continue to live your life, just you have to view it a little bit differently, and your children are more than just the title of MPS.

Yeah Her spine is healthy, her brain is healthy, and out of all of this I think that is the most important and fortunate thing, is that I have a child whose brain is so smart. Anisa Speaks in French So I’m, I’m very lucky that way. Mhh, I know, Thank you!
 You keep reading, I’ll still listen. I’m not yelling. Ow! You don’t need to, talk in your normal voice..