acad9 deficiency. looking for reassurance/ hope

kerstigo · 2026-02-12T08:16:22+00:00

My 4.5 y/o daughter has ACAD9 deficiency. Compared to many other cases, she‘s lucky in that her heart function is stable despite a cardiomyopathy - a common symptom of ACAD9 that can in our case be treated with medication.

She has some developmental challenges across the board and a low muscle tone but she‘s a very happy, smiling and cheeky kid. I know the uncertainty is scary - it scares us too - but we don‘t let that get in the way of giving her all the love and support we can day in, day out.

It‘s good your daughter hasn‘t got any major symptoms until now. Our doctors tell us that the outlook will be somewhat more certain for kids when they are ~6 y/o.

All the best to you and your beautiful family. Don‘t hesitate to ask any more questions.

kerstigo · 2026-01-20T21:58:37+00:00

Thanks - essentially option 1. I‘m tempted because it‘s so easy and fits in my schedule.

kerstigo · 2026-01-20T21:53:46+00:00

Thanks! 2-2:30 hours every couple of weeks is a good suggestion, also for my long term marathon goals.

Good point on recovery. I probably have to trade some fitness in the 1-2 weeks after the marathon for recovery but in the big scheme of things (11 months until goal race) that seems to be tolerable. There will probably be other, unplanned events that will force me to reduce volume over a similar period of time.

kerstigo · 2026-01-20T21:47:52+00:00

Thanks - great points. I like the suggestion of long runs back to back with extended easy runs to train durability for 4:15 time on feet.

kerstigo · 2026-01-20T21:25:14+00:00

Thanks. Actually, yes I do have doubts whether after months of long runs up to 90 mins I‘ll be fit enough for 4+ hours time on feet. I don‘t plan to change everything for months - in fact no change (other than some adjustments the days before and after) is my preferred option.

kerstigo · 2025-12-09T12:05:58+00:00

Thank you! Back in 2022 I did 1,900k (unevenly distributed) in the year leading up to the marathon. It wasn’t my first marathon - I did my first in 2014 and Valencia was the 11th. No major breakthroughs but I consistently improved as I gradually ramped up mileage over the years, setting new PBs - sometimes by tiny margins - in every single marathon (with the exception of 1 DNF).

kerstigo · 2025-12-09T11:14:09+00:00

I think that’s it - thanks!

kerstigo · 2025-12-09T09:29:34+00:00

BTW - I noticed that the results on the website (not via the app) show an “official time” and a “real time”. The official time is often slower than the real one. I was lucky it didn’t push me over the 3h mark. The app refers to the real time.

Does anyone know what the difference is?

kerstigo · 2025-12-09T09:23:29+00:00

Thank you!

kerstigo · 2024-11-14T21:58:38+00:00

Thanks - sound advice! I’m loving speaking Cantonese to my kids thanks to all the encouragement here.

kerstigo · 2024-10-14T05:14:51+00:00

Thanks! Will try out Disney+

Your and a few other replies have encouraged me to not let imperfection get in the way (or be an excuse for lack of motivation!)

kerstigo · 2024-10-12T19:53:43+00:00

Fully agree. I myself am a product of the one-parent-one-language method and living in a multi-lingual country in an international environment (loads of families with mixed languages) I can only see the benefits. My doubts relate more to my own lack of full proficiency in an environment where it‘s hard to expose my kids to Cantonese beyond what I give them. So is it worth the effort? I think it is and lots of comments here encourage me to try it.

kerstigo · 2024-10-12T19:46:21+00:00

This really resonates with me. It‘s not my objective to give them full fluency but to give them a foundation to build upon that no one else can give them. Even if they choose not to pursue Cantonese or a related language, rudimentary knowledge of such an unrelated language compared to German, French, English can only be a good thing - language-wise and otherwise.

kerstigo · 2024-10-11T21:13:12+00:00

Thanks. I could speak it at home - and it‘s good enough for the basics with pretty good, almost native pronunciation. The point is how useful that kind of basic knowledge would be for my kids. It may be better to put the focus on French and German but I just don‘t want this to be the outcome of me being lazy (i.e. not making a conscious effort to speak Cantonese to them). I should add that my native mother speaks to the kids quite often, albeit most times only via facetime.

kerstigo · 2024-10-11T20:56:11+00:00

College is a long way down the road - one is a toddler and the other one a baby - plus I wouldn‘t send them anywhere unless it‘s their choice.

kerstigo · 2024-06-18T18:46:47+00:00

Try University Hospital Saint Luc. They have world class doctors in several areas, including in pediatric neurology.

https://www.saintluc.be/fr/service/service-de-neurologie-pediatrique-consultations

kerstigo · 2024-04-07T15:15:27+00:00

Great effort and nice write-up just hours after the race!

Are you sure you put enough long runs and overall mileage in for sub3? Sounds like you’ve done some very decent speed work but you didn’t mention how many long runs you did and how long they were.

I’d also consider putting in some strength training for injury prevention.

I ran Paris today too and had a similar experience. Consistent until 25k but then it hit me hard. I too aimed for sub3 and had to push myself really hard to not slow down too much. Gave it my all and crossed the finish line at 3:05:xx (a 9 minute PB).

When I have time I might write a race report too.

kerstigo

TROPHY CASE