11/18/2025
If there is any help you can give to the Jada Foundation while she is Boston for 7 months, especially with the holidays coming up, we would greatly appreciate it.
Where do I even begin. It’s hard to think about this, never mind write it and share it. But you’ve all been on this journey with us since we got accepted into the trial in March, so it feels right to keep you close now too.
It’s pretty clear we miss home. The first few days here have been really hard. We’ve had ups and downs, and we’re trying our best to make this work, but it’s been a lot tougher than we expected. That has become my most used line lately. It’s harder than I thought.
The flight took everything out of our girl, and jumping straight into a doctor’s appointment didn’t help. I honestly think that’s what triggered this heavy sadness in her. If you know Jada, you know she’s a girl of routine and comfort. She thrives in her familiar space. Being here is a full shift from her normal. Almost everything is different, especially the day to day things. The things only we understand, and the things I knew would be an issue but couldn’t fix until we arrived and tried to make this apartment feel even a little bit like home.
Small things are suddenly big things for her. Using the loo without her rail. Not having her usual potty. Bathing without her comfy bath chair. Sleeping without her bed and all her teddies, each one with a name and almost part of our family. Missing her favorite toys. Missing her walks in the garden with her dogs. Feeding them. All of it has stacked up. She lights up when we talk about home, but she’s battling to find comfort here.
As for Mom and me, we stay brave for Jada, even when it feels impossible. We each have our turn for an ugly cry, then we pull ourselves together and get back to doing whatever needs to be done to make sure she’s okay.
Moving here has been rough. What was meant to be an exciting trip has turned into a “counting down the days until we go home” trip.
Jada starts the actual trial on 5 December. That’s when she’ll have her lumbar puncture and MRI for her baseline, then her first dose of the drug, Fosigotifator. I’m excited for this part. Maybe this will unlock a new level of settling in. I’m praying it does, because this has been hard.
Emotionally and financially. Yes, the sponsor covers the trial and some daily meals. But we didn’t budget for life. Starting from scratch in an apartment adds up in ways we didn’t expect. Mom and I laugh about it now. The other day I needed an earbud and she said, “Kim, we bought a whole pack at Dischem the other day.” Our minds are still back home, where everything was already in place.
So yes, it has been rough, living on a budget in Boston while trying to keep Jada comfortable first and always. And the till slips don’t help. In my head, 98 dollars still registers as 98 rand, but it’s far from that.
Most of you know I haven’t been working since March. I’ve relied on my part time work and on our incredible community, who have carried us again and again.
So this is me, pride in my pocket again, asking for help. Big or small. Anything towards our journey here will make a bigger difference than you know.
You helped get us here. I’m asking for one more helping hand to make things a little easier while we’re away from home.
And as always, if it’s not in your heart or not in your budget, that’s okay. Love, support, thoughts, and prayers carry us too. But if you are in a position to help, any amount will mean so much to us.
Account holder: Jada Ann Foundation Trust
Account number: 10014074612
Bank: Investec Bank Limited
Branch name: Investec Bank Grayston Drive
SWIFT code: IVESZAJJ###
Branch code: 580105
We are so grateful for all you have done and continue to do for our family 🙏🏼
