SMA Support

Updated on June 09, 2011
J.L. asks from Cos Cob, CT
4 answers

Hi mamas-
My beautiful 4 month old baby girl was diagnosed with Spinal Muscular Atrophy - level 1. My husband and I are devastated and heartbroken. Emily has been in the hospital since 5/26 with respratory issues, and is scheduled to have surgery tomorrow to have a g-tube with nissen put in place to feed her. We have been overwhelmed with the medical aspects of this cruel disease but need to meet and speak to families who have been through or are going through this. If you know of any support groups for families of SMA or are a mama dealing with SMA- please contact me. We live in Greenwich CT.

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So What Happened?

@little miss- thanks for your answers! i don't know how to reply to a message so i will do it here! Don't worry about your response. I am sadly aware and realistic about her prognosis, so it is ok to talk about someone who lost a child to SMA. I know that it is inevitably going to happen to my sweet Emily.

More Answers

L.M.

answers from Houston on

Hi J.,

I have sat here looking at your post and debating sending you this response. I know someone who has a blog. She has been thru this horrible disease with her daughter. Her daughter MaKenzie was diagnosed with Spinal Muscular Atrophy with Respiratory Distress (SMARD), so this may be a L. different than what you are going thru but similar. She is located in Utah. I MUST tell you prior to you going onto this blog... her daughter did pass away last year. This is why I struggled with sending you her blog information. I don't want to send it and have you wonder "why on earth would you send this to me??? This is not what I needed to see"... I am only sending it to you for Kendra's support and knowledge. I don't personally know Kendra. She is a friend of a dear friend of mine. I follow her blog. Oddly enough, we have discovered that we work for the same company though...small world.

Anyway, Kendra is the sweetest woman! I truly think she would be a huge help to you and a great support system. Since McKenzi'e passing, Kendra has done amazing things to raise money for this disease and make it known. She has organized an amazing walk for SMARD (last year) and she is also in the process of planning the 2nd event. She has also worked closely with the PICU/NICU at the hospital her daughter was in. She has lead a "baby leggings project" to help those L. babies out there who need that warmth. Like I said...she is amazing! She is young. Her family has been broken. But she has taken this challenge and has changed the lives of other L. babies and parents who just need a L. help and support. I hope you reach out to her if you need it. Again, please...I did not send this to you to offend you in any way, I am doing it to send you someone who may be able to emotionally support you and someone who can relate. I wish you all the very best and again, I am so sorry you are all having to go thru this.

Her blog is www.kendraandryanwebster.blogspot.com

her daughters blog which is all about SMARD and the events is:

http://livingformrw.blogspot.com/

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A.C.

answers from Columbus on

J.,

My heart goes out to you and your family. I will keep you all in my prayers.

I found some online resources that might be helpful for you, and may be able to point you to a local support group:
http://www.familyvillage.wisc.edu/lib_spma.htm
http://www.mdjunction.com/spinal-muscular-atrophy
http://www.kumc.edu/gec/support/spinal_m.html

You might also want to call the largest Children's Hospital in your area and ask them for assistance in locating support groups and support resources.

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S.B.

answers from New York on

Dear J.,
First, I'm so sorry that you're going through this. I've had my own heartbreak with a different childhood illness and I know how chaotic your world becomes when you get that news. I am in Lower Westchester but go to church in Greenwich. What hospital is Emily being treated at? We were at Greenwich Hospital when we received our son's diagnosis but transferred his care to Columbia U. as we felt a center of research would be our best option. Have you looked into Columbia or Yale?

Here is the link for your state's chapter of SMA families:
http://www.fsma.org/FSMACommunity/Chapters/Connecticut/
I checked NY as well but neither chapter would be convenient to you. That's probably your best resource in terms of treatment and care in our area.

Lastly, if I can be of any support to you, even if it's just to listen, please do not hesitate to ask. My email is [email protected]____.com You are really wise to seek out families who are walking in your shoes. It will be a gift to your daughter and to each other for you and your husband to take care of yourselves in that way. You and your family are in my thoughts and prayers!

S.

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C.O.

answers from Washington DC on

I'm truly sorry you are going through this...

You are in my thoughts and prayers.

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