A “Brief” History

Most of you have seen the initial story shared to GoFundMe, about how long Momo has, about our wishes and wants for the future. I wanted to set up a place where I could tell the stories about Momo that you might not have heard or would love to know more about. Especially Momo’s Medical Journey, my journey as a parent and how we got to the place we are now.

Early Momo:

Momo was born the year after I graduated. I was 18 years old, Young Dumb and full of…. well, I had a baby didn’t I?
She came into the world 2 weeks late and 2lbs heavier than I was when I was born. She had a full head of hair and a couple complications, but by the end of the first day, we were cuddled up in the NICU. She went home after only a couple days in hospital and then we went to visit my folks in BC. Visiting lead to moving and I made my migration back from Alberta to BC.

Once we were in BC we noticed some irregularities in how she saw the world. She had a pronounced Nystagmus, a shaking of the eyes. What they told me then, is she would have a visual impairment. We wouldn’t know for a while what that would look like, but that she wouldn’t see in the same typical range as a child her age. (Remind me one day to tell you the Sixel-Kid at the Hospital Anecdote!) Her primary sense at the time would be touch and hearing.

At the age of 3, we noticed a marked delay in her hearing and sound pattern recognition. Living as we did in a small town, no one really knew how to test the Blind kid for hearing loss. She couldn’t point to the pictures, she didn’t look to where sounds came from. She was a unique creature. At the kindergarten level we finally got a “Good enough” hearing test done and she was awarded her first set of hearing aids.

School Age Momo:

In between this diagnosis and the next we had a long period of stability. She had the occassional con crud from following me to Rainfurrest and going on adventures there. She ended up with in the hospital with Pnemonia a couple times from those, but otherwise, nothing remarkable happened until 2018. She was just turning 11 when she began to have these Episodes of Extreme vision loss. She would go from being light sensitive and aware of her surroundings to being wrapped in complete darkness. The first time it happened, she came running out to ask us why the Power went out.

I spent Months documenting and recording each episode. We went to the Vision clinic, the Opthamologist, we did a seizure screening and 24hr blood pressure monitoring. Nothing came out of it. Finally, we had a neurologist appointment. We got there, my boyfriend at the time, Momo and me, and 20minutes after our appointment time, the neurologist came out to tell us that our appointment had to be cancelled. That we would have to reschedule. The episodes had been becoming longer and more frequent, and no one could tell me what was going on with this kid. I was not leaving.

The poor receptionist looked like she was backed into a corner, but I had been fighting for answers for months at this point. The Mama bear in me was Activated. So the receptionist gave me the option to wait until the office closed and she would let the neurologist on call know that we were waiting to be seen.

It worked! We finally were seen by SOMEONE. And they took it seriously. Mostly cause I think she had an episode in the middle of the visit. Her pupils got really big and dialated, she was no longer light sensitive (photophobic) and she was just peering around like she should be able to see things, but couldn’t. We were admitted to Children’s hospital for the first time that night. The next 10 days were a blur. We got so many diagnostics done. Tests in the room, tests in nuclear imaging, tests of all sorts. We walked out of there with a new diagnosis, diabetes and a theory of an underlying condition that would come to define the next 5 years of my life: Alstrom Syndrome.

Youth Momo:

From the Diabetes diagnosis we went on to do genetic testing which confirmed the theory. We knew then it would be a slow decline in her health but we had had hopes that she would live a long time with this diagnosis. For kids with her condition, she had already passed multiple mortality milestones. But it was too soon to celebrate. 4 years later at the age of 14, she had her first Acute Kidney Injury. What her bloodwork showed was a marked rise in her markers for Chronic Kidney Disease. At first, they worried she was already in end-stage kidney disease but with adjustments to her routine and medications, we brought it down to chronic, stage 2! It was a huge relief the first time we heard Chronic instead of End-Stage!

Another few injuries and we found that her liver wasn’t performing as we expected either. It marked our investigations into her hepatic function and showed that she had Non-Alcoholic Fatty Liver Disease at the age of 15. Her liver looked as if she had been a casual drinker for most of her life. In the subsequent years we found it had progressed to Cirhossis of the liver and now she is struggling with Portal Hypertension. This portal hypertension is putting stress on her spleen and intestines as they work harder to send nutrients and toxins to the filtering organs. Her Platelets and White Blood Cell counts are dropping.

Now we are seeing a marked decline in her quality of life. She is having more time in her sleeping spots. She loves to be under her heated blanket in bed or under her comfy blanket on the couch. She naps most of the day now and her meals are fewer and less in quantity. She hasn’t lost a ton of weight, but she doesn’t have much muscle mass. When she goes out, if it’s for more than an hour, she prefers to ride in her wheelchair. She has persistent symptoms despite the optimal treatment of her conditions, including hypersensitivity to touch and textures, constantly feeling itchy and in pain. She is always cold.

It leaves me with worries and concerns for how long she has. A lot of people tell me to enjoy the time I have with her. I think our best quote comes from Dr. Hal Siden at Canuck Place Children’s hospice, “We can’t predict the weather. We don’t know what it will be from day to day, but we know the climate. The best we can do is be prepared for the worst.” I try to live by that in the moments when I worry. When I don’t know what the next day will bring. When we have those bad nights that lead to early morning drive ins to the emergency room.

I am so grateful for the opportunity to share our story, that you want to know more about where her medical history has taken us and brought us too. I have more stories, and this was a VERY very brief overview of her medical adventures. If you want me to share more, please let me know. I just want people to learn from our experiences as much as I have.

All the Best,
Rhari