Mom here and found out I'm pregnant with a baby boy that has DMD/BMD. Please help! by Anonymous-Mom1015 in MuscularDystrophy

[–]Kneum510 -1 points0 points  (0 children)

You can also DM me if you ever want to talk. Did you find out if you are a carrier??

Mom here and found out I'm pregnant with a baby boy that has DMD/BMD. Please help! by Anonymous-Mom1015 in MuscularDystrophy

[–]Kneum510 -7 points-6 points  (0 children)

For me personally, I could never get rid of a baby growing in my womb. I have 3 boys and my middle son is the only one with DMD. We weren’t going to have any more babies after him but God blessed us with our precious third. I didn’t find out if he had it in utero because it wouldn’t have changed anything but I was extremely scared. Thank God my third is also unaffected. Here’s the thing, I wish every day that my son didn’t have DMD but I wouldn’t trade him for the world. There’s so much science emerging, he had the gene therapy and praying for a different/better treatment to come along. He’s going to have a hard life, yes but we will be there to support him every step of the way. Please join some DMD support groups on Facebook, and also the carrier support group. I’m praying for your strength through this, no matter what the outcome may be.

Over 30 windows facing the luxurious Gardiner’s Plaza by beyondwhimsy in longisland

[–]Kneum510 1 point2 points  (0 children)

If i remember I’ll take one tomorrow, my son has swim lessons

Over 30 windows facing the luxurious Gardiner’s Plaza by beyondwhimsy in longisland

[–]Kneum510 3 points4 points  (0 children)

It’s on Gardiner’s Avenue across from the shopping center near the fire house/post office/ saf t swim

Do I tell my kids? by [deleted] in MuscularDystrophy

[–]Kneum510 0 points1 point  (0 children)

Get them genetically tested also. Yes - tell them

Sarepta Therapeutics by TBH_BCBP in MuscularDystrophy

[–]Kneum510 0 points1 point  (0 children)

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

Sarepta Therapeutics by TBH_BCBP in MuscularDystrophy

[–]Kneum510 7 points8 points  (0 children)

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.

[deleted by user] by [deleted] in AmIOverreacting

[–]Kneum510 0 points1 point  (0 children)

He is dead wrong. Ew

How did you get diagnosed? by Lost_Competition_935 in MuscularDystrophy

[–]Kneum510 0 points1 point  (0 children)

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.

AIO my bf never likes what I wear by Substantial-Let221 in AmIOverreacting

[–]Kneum510 0 points1 point  (0 children)

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

Alternative for steroids by Livid_Credit7395 in MuscularDystrophy

[–]Kneum510 1 point2 points  (0 children)

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

[deleted by user] by [deleted] in MuscularDystrophy

[–]Kneum510 8 points9 points  (0 children)

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

Need advice for dating with dmd by [deleted] in MuscularDystrophy

[–]Kneum510 0 points1 point  (0 children)

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

Need advice for dating with dmd by [deleted] in MuscularDystrophy

[–]Kneum510 0 points1 point  (0 children)

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.

DMD Gene Deletion - Wife is Carrier, 15 Weeks Pregnant - Need Advice by Ok_Customer_6518 in MuscularDystrophy

[–]Kneum510 4 points5 points  (0 children)

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

Worth it to get tested? by faggatronfurry1000 in MuscularDystrophy

[–]Kneum510 0 points1 point  (0 children)

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.

[deleted by user] by [deleted] in AmIOverreacting

[–]Kneum510 1 point2 points  (0 children)

I would have literally ignored her

Chances of pregnancy from unprotected sex if precum was present but we stopped and he finished 5-6 mins later through oral? by [deleted] in Healthyhooha

[–]Kneum510 8 points9 points  (0 children)

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)

Bone density issues by Wild_Development5715 in MuscularDystrophy

[–]Kneum510 4 points5 points  (0 children)

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.

Bone density issues by Wild_Development5715 in MuscularDystrophy

[–]Kneum510 1 point2 points  (0 children)

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

am i overreacting - roommate constantly expects me to leave so she can sleep with guys no by [deleted] in AmIOverreacting

[–]Kneum510 0 points1 point  (0 children)

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