Struggling, sad and need advice.

[monarobinson]

Trigger warning: very sad medical prognosis for infant mentioned.

I just received some heart wrenching news and I can't discuss it with many people IRL yet. My cousin with whom I'm very, very close gave birth to a beautiful, amazing baby boy just about a week and a half ago. Pretty much right away, the doctors and nurses saw a need to immediately transport him to a larger hospital with a more skilled and better equipped NICU. His movement was limited, his ability to suck and swallow was lacking, he was seizing. He underwent a battery of testing as well as several blood draws, none of which gave an answer as to why he was having these struggles. A genetic blood test was ordered and the results are in and are devastating. This beautiful boy has Type 1 Sp.inal Mus.cular At.rophy. The prognosis is very grim. Babies with this diagnosis typically do no live beyond the age of 2, many pass away before a year and spend their days on a vent. I sob everytime I think about how wrong and awful it is for a baby to live like that.

My cousin and her husband are devastated, our family is heartbroken. As we do in times like this, I immediately want to help, to fix, to do something. I've been praying so hard that the news would be good....or even better than this. She lives roughly 45 minutes from the hospital, travels back and forth as often as possible because she has a 2 year old at home. She's run down, defeated and is just trying hold it together. I live 2 hrs from her but there has to be a way I can help, something I can do for her or send to her to help. Any advice is appreciated. If you have room in your thoughts and prayers, please keep her and other families going through something similar in them.

[PatBenatar]

Oh no I'm so sorry. I'm sure anything you can send to make her life easier would be appreciated - cleaning service, gift cards from restaurants that deliver

They will be in my thoughts ((hugs))

[carawestt]

Oh, I'm so sorry. I will be thinking of them. I think anything you offer to do for them will be greatly appreciated.

[TrudyCampbell]

Oh, how devastating . I'm so sorry. Your family will be in my thoughts.

[bean47]

I'm so sorry. I'll be keeping her in my thoughts. SMA is just devastating.

[monarobinson]

Thanks guys. I never thought I'd have to make a post this tragic and sad. She lives in a very rural area so delivery is probably not an option but I've recuited my brother to drop off a bunch of takeout later tonight.

I'd love to get her something special with his name on it. I was thinking of checking out Etsy for ideas.

[devonpow]

I am so, so sorry.

I encourage you and them to look at the Gwendolyn Strong Foundation for guidance and information (it's a family who is good friends with my BFF - their daughter Gwendolyn has SMA and they started this amazing foundation). It's a devastating diagnosis, I know.

[devonpow]

Forgot the link : thegsf.org

[rjamz]

I'm so so sorry. Sending so much love to you and your family

[monarobinson]

Sept 9, 2016 12:28:04 GMT -5 devonpow said:

I am so, so sorry.

I encourage you and them to look at the Gwendolyn Strong Foundation for guidance and information (it's a family who is good friends with my BFF - their daughter Gwendolyn has SMA and they started this amazing foundation). It's a devastating diagnosis, I know.

Thank you so much for sharing this.

[dbe100408]

I'm so sorry. I will keep your family in my prayers. Hugs.

[Faevantastic]

First of all, I'm so sorry for your cousin and your family. Can you take trips to help her with house related things?

[monarobinson]

Sept 9, 2016 12:49:29 GMT -5 Faevantastic said:

First of all, I'm so sorry for your cousin and your family. Can you take trips to help her with house related things?

Thanks. I'm going to go home (my parents house) next weekend and take her DD overnight. That's another layer to all of this....her DD is 2 and doesn't understand why Mommy is gone a lot and baby brother has t come home yet. Tragic all the way around.

[ivegotthemunchkins]

I'm so sorry to hear this. My good friend's nephew suffered from SMA. It is so heartbreaking to see someone so little go through so much. I hope your cousin can find some local support groups. My thoughts are with her and her family.

[jenbelle]

Oh, mona, I am so very sorry. I will keep them in my prayers.

[Na]

Oh my goodness Mona I'm so sorry. I think taking her dd overnight is a really great idea. I'm sure her dd will enjoy herself so much and her mom can breathe a little easier.

Maybe something like this for the baby?
www.personalcreations.com/product/deluxe-baby-keepsake-kit

[shevacc]

I'll be keeping your family in my thoughts and prayers. What a heart wrenching diagnosis

[tuck]

How devastating. Your family will be in my thoughts.

[imimahoney]

Oh gosh, I am so sorry for your family and that sweet boy.

[monarobinson]

Thanks guys.

[nannerl]

monarobinson, I'm also part of an SMA family. FightSMA has some good information.

fightsma.org

Type one is a shattering diagnosis, but there have been amazing strides made in the last 30 years. Any support I can offer, please let me know.

[chirpchirp]

I'm so sorry.

Another thing to consider taking them are some pantry/snack staples...quick things to snack on in the car or at the hospital

[sandj82110]

I'm so sorry. I'll keep your family and that sweet boy in my thoughts.

[raynes]

Oh mona, I'm so sorry. A friend's neighbour just lost their daughter to SMA. It's such a horrible diagnosis. All I can think of is finding a way to help make it easier for her to be with her son. Gas gift cards, helping her find a place to stay that's closer (do you guys have Ronald McDonald House there?) or exactly what you're planning by helping with her daughter.

[fusion]

I'm so sorry, how devastating

[monarobinson]

Sept 9, 2016 14:18:27 GMT -5 chirpchirp said:

I'm so sorry.

Another thing to consider taking them are some pantry/snack staples...quick things to snack on in the car or at the hospital

That's a great idea. Thank you <3

[monarobinson]

Sept 9, 2016 14:42:32 GMT -5 raynes said:

Oh mona, I'm so sorry. A friend's neighbour just lost their daughter to SMA. It's such a horrible diagnosis. All I can think of is finding a way to help make it easier for her to be with her son. Gas gift cards, helping her find a place to stay that's closer (do you guys have Ronald McDonald House there?) or exactly what you're planning by helping with her daughter.

We do have Ronald McDonald House locations but I'm not sure what's available in that area. I'll check it out, it's a great idea. Thanks so much.

[tennisgal]

I can't remember what area you are in, but you could also look to see if there is a Shriners Hospital in the vicinity....but I'm not sure if SMA is a condition that they treat

[kandrze1]

I am so sorry.

[artgal84]

I'm so sorry