Riaan turns 22 months-old, and we launch a new campaign: #Match4Riaan
Also, some random thoughts in between.
by Jo Kaur
I used to be so in awe of people who founded and ran non-profits. Then I became one. But honestly, while it’s a lot of work, it’s nothing that impressive. Is it? You tell me.
Today was one of those days. My bones ache. But alas.
We have some very exciting news, folks. Today we launched an incredible campaign all fueled by one of the most incredible, angelic, amazing donors in the universe. It’s called the #Match4Riaan birthday campaign. From here until December 12 - when Riaan turns 2 - all donations up to $100,000 will be matched by this super generous donor! We are so thankful and grateful. To donate, please visit: https://www.classy.org/campaign/riaan-birthday-match-campaign/c369158. (You can also access this page from our website at riaanresearch.org/donate).
After Riaan and I woke up this morning (his dad was at work), I made him his milk. I kissed him and hugged him, and wished him Happy 22 Months! He was annoyed but gave me the classic melt-your-heart Riaan smile. He hadn’t gone number two in two days (his chronic constipation flaring up again) so I added some Miralax to his bottle. I also mixed in his Gelmix. You see, we thicken his milk because a swallow study showed that he is in danger of aspirating. I set the timer to five minutes for the milk to thicken and put Riaan in his pack n’ play. I ran to the computer to “launch” our #Match4Riaan campaign. Riaan began complaining, he was annoyed because he wanted his milk. I quickly typed up some posts, announced our campaign on social media, ran back to the milk, and then picked him up and gave him the bottle. He was happy.
I placed him on his mat to play with his toys, and returned to work on the computer. Soon, it was time for breakfast. Riaan ate. About 3/4ths of the way in, he shoved his food away. We took a break so he could walk on his KidWalker and do his PT by telehealth today. He did a whopping 8 roundtrip laps in the kitchen - easy peezy - keeping his head up the entire time. We then practiced sitting independently. I put pillows around him on the mat to catch him if he fell, and read him books. Today, a major breakthrough! He sat on his own for a bit without using any of his hands for support! He also seemed to have good, steady control of his lower body, and better control of his upper body and head/neck. So proud of this kid! Every day, every moment, he fights.
After physical therapy, we finished breakfast. Then I put Riaan in his crib and ran his bath. I grabbed a cup of coffee in the interim, took a phone call with a Punjabi anchor that wanted to do a repeat television interview with us, and then answered some emails. Researchers from Switzerland had sent me a research paper on CX mice, the same mice we are using in the UMass CSA gene replacement therapy project. I quickly skim the paper - putting it away for more in-depth reading later - and pass it on to our UMass research team, and a member of our Scientific Advisory Board.
Riaan then has a nice and relaxing bath and massage. I take him to his bed after, lotion him up, give him a bottle, and try to relax him into taking a nap. We play our usual Enigma playlist on Alexa. At first, he isn’t interested but then curls up quickly and falls asleep.
I run outside to do some more work. I jump back on the computer, sending and receiving emails, posting on social media, and trying to get the word out about our new #Match4Riaan campaign. I chat with our board members. I review and finalize a contract with RareBase (rarebase.org) to engage in a new drug screening opportunity for CSA mutations that cause Cockayne Syndrome - a program called FUNCTION. We want to engage in multiple therapeutic options because gene replacement therapy programs can take time.
Suddenly, it’s 2 pm, and I remember I haven’t eaten all day. I heat up an Amy’s organic frozen spinach pizza. I forget about it and return to work at my computer. Then I smell burning, I rush to the oven, turn it off, and take out the pizza. I begin eating, while back at the computer. Hungry and distracted, I eat the whole thing. I probably shouldn’t have.
Then I hear a cry. Riaan wakes up. I pick him up, we hang, I change him, and then try to feed him a late lunch. He doesn’t want it for some reason and winces. I don’t know why. I make him a milk, he drinks most of it. Then we have an OT session by telehealth. After we finish, Riaan’s dad comes home, thereby relieving me of some of my parental duty, and allowing me to return to work. We finish feeding Riaan his lunch. We then receive a present in the mail: it’s a gift of books from Riaan’s Uncle Winty. We take them out together, and read them to Riaan. He loves every moment.
Sometimes I wonder what my days would be like if I wasn’t trying to get a cure developed. If Riaan had this diagnosis and I did nothing, I’d hate it. But what if he didn’t have Cockayne Syndrome? How would we spend our days? What would they look like? What do the lives of parents with typical children look like? Honestly, I wouldn’t know. I’ve never been in their shoes.
But either way, I’m grateful for the opportunity to be doing something rather than nothing in our situation. We have this diagnosis, and I’m so glad we are gaining the resources to fight it. Thankful to you, our donors, to you, our supporters. Without you, we couldn’t do any of this work. You give us hope.
P.S. Riaan went number two twice today. It was a whopper, folks!