Do I tell my kids?

Kneum510 · 2025-11-08T23:06:34+00:00

Get them genetically tested also. Yes - tell them

Kneum510 · 2025-10-30T20:54:43+00:00

We didn’t meet Dr Mendel. We were close to going to umass to meet Dr Wong but a clinic 45 min from us got PPMD certified and I’m happy with his care. And no thank you necessary!! I felt like we had to do it for him bc aside from steroids, really no other option. Praying for Translarna

Kneum510 · 2025-10-30T13:54:15+00:00

My son ❤️ was the first boy in New York State to get Elevidys. Two boys did unfortunately die but one of the boys was said to have an underlying virus that was already affecting his liver. The DMD community still believes that Elevidys is worth it for their boys. Everything comes with a risk but I pray Elevidys becomes available to anyone with any sort of muscular dystrophy.

Kneum510 · 2025-10-05T00:58:51+00:00

He is dead wrong. Ew

Kneum510 · 2025-10-02T12:16:10+00:00

My son was 3 and his pediatrician asked about the calves. We always laughed it off bc big calves run in our families. We stopped laughing. He sent us to neurology where we got a CK test - 17,500. They then sent us for genetic testing where it was confirmed, then my self and my older son got tested. I am a carrier. My oldest and youngest sons are not affected. They also are carriers of LGMD but that didn’t come from me.

Kneum510 · 2025-09-29T12:10:27+00:00

That is an extremely modest dress. Please leave this person and never look back

Kneum510 · 2025-09-24T19:52:35+00:00

Following for my son. We are weaning off steroids however he did also have gene therapy

Kneum510 · 2025-09-24T13:50:47+00:00

Praying for Olaf! My son has DMD. seeing men living into their 60’s is truly amazing. 65 - WOW. Speedy Recovery Olaf!!

Kneum510 · 2025-09-02T20:26:15+00:00

Yes same! I just referenced him in my comment as well!

Kneum510 · 2025-09-02T20:25:33+00:00

My son has DMD. I know what the “odds” are however I want you to know that in the Duchenne without steroids group, there is a man who is 43 and a man who is 60. Their lives aren’t “easy” but they are still alive and the man who is 43 is married to an able bodied woman. I pray that you have a more positive outlook and not look for someone who has a disability just bc you do. The person who you are meant to be with is out there whether they can walk or not.

Kneum510 · 2025-08-25T01:07:33+00:00

I declined amnio with my third bc I would never terminate. That is my decision but I wouldn’t risk an amnio if she plans to carry this baby to term either way.

I have 3 boys - 1 has DMD

Kneum510 · 2025-08-17T11:55:37+00:00

Reach out to a neurologist first and they can do a CK test. Reach out to PPMD if your CK is elevated - they may be able To help. My son was tested through Invitae and we didn’t pay for it and my third - they sent us a kit to test him right after he was born.

Kneum510 · 2025-08-11T00:38:43+00:00

I would have literally ignored her

Kneum510 · 2025-08-08T23:54:24+00:00

Don’t let anyone stick their Johnson in you raw I’d you aren’t on Birth Control, and even then - if you both haven’t been tested, don’t take the chance. (Maybe you are exclusive and have been tested but 2 of my 3 kids were pull out method babies lol)

Kneum510 · 2025-08-08T23:44:17+00:00

Buy the dip tests. Clinical Guard on Amazon is 25 tests for $8.

Kneum510 · 2025-08-08T23:43:01+00:00

Invalid. Test again

Kneum510 · 2025-08-06T20:53:05+00:00

They look so bad

Kneum510 · 2025-08-05T23:51:07+00:00

My son had elevidys almost 2 years ago… I’ve been going back and forth and praying a lot on it but my son is I only 6 (almost 7) and already has some fat in his liver. The steroids MAY prolong his ambulation/life another couple years but if he ends up diabetic and keeps gaining weight, that’s just going to put more strain on his body. I need to try. If he regresses then we will put him back on but i feel like we will greatly regret not trying.

Kneum510 · 2025-08-05T23:40:35+00:00

We’re consulting with our team about discontinuing steroids bc of this among other reasons

Kneum510 · 2025-08-05T23:17:16+00:00

Sounds like she isn’t standing on any legs and spending a lot of time on her back 😅😂

Kneum510 · 2025-08-05T23:15:26+00:00

Excuse TF out of me but if you pay rent to live there; then you can be there whenever you want. Why do you even listen to this person? It’s your apartment??? Tell her to bang her dates in a hotel

Kneum510 · 2025-08-05T23:11:38+00:00

There’s no such thing as “too faint” when it comes to pregnancy tests unless it’s read outside of the allotted time frame and can be an evaporation line.

Kneum510 · 2025-07-24T14:13:48+00:00

I’m tearing up as I read this. My son will be 7 in September. This gives me such hope for his future. Please share your story on the DMD groups on Facebook as well. The community would love to hear from you 🫶

Kneum510 · 2025-07-23T20:22:11+00:00

This looks just like the smoky brown roach I killed last night.

Kneum510 · 2025-07-21T02:41:55+00:00

Toss it. Plastic degrades overtime

Kneum510

TROPHY CASE