SMA

brothers on the couch

 

Although this isn’t a blog about Spinal Muscular Atrophy per se, SMA affects every aspect of our lives. I created this page to share Fulton’s and Teddy’s back stories, links to my most recent posts about SMA, (visible under the SMA Category ), and links to SMA resources.

For a quick background on this neuromuscular disease I recommend starting with my post Seven Things You Should Know About SMA.

Below, I have linked to posts I wrote back in 2009, originally via Facebook notes, when we were first struggling to find out what was wrong with Fulton. I’ve also included the difficult note I emailed to friends and family that announced the heartbreaking news of Teddy’s diagnosis. Finally, you can read some posts on my old blog where I shared my thoughts. Warning; none of these are especially cheerful. It took awhile for me to arrive at where I am today. I’ve transformed from a woman who in June 2009 never thought she would smile again, to the writer of a humor blog. With God, all things are indeed possible. If you are struggling, never give up hope.

Background on Fulton 5/27/09

Arriving At a Diagnosis 6/09

Adjustment; The First Few Months

One Year After the Diagnosis– reflection from my old blog. Mentions Tony’s layoff, his parents moving in with us, my pregnancy with Teddy; it was a stressful time. 

Teddy’s Diagnosis 10/22/10 I’m happy to say, the doctor’s predictions were wrong and Teddy has a milder case of SMA than Fulton. There were no updates on Teddy for over a year because for one year, he was a perfectly normal baby. The doctors still can not explain the great discrepancy in Fulton’s and Teddy’s conditions. 

A post on my old blog about my spiritual struggles immediately following Teddy’s diagnosis.

Update on Fulton and Teddy 2/23/12

I wrote a series of posts on this blog in August 2015 in honor of Spinal Atrophy Awareness Month. They are some of my most popular posts to date and they clearly show the attitude adjustment I’ve experienced since my darker, early days.

A Six Year Journey

My Moral Dilemna as a Catholic SMA Mom

Seven People Sticking it to SMA

The Hard Work of Choosing Joy

We have a great devotion to Archbishop Fulton J. Sheen, who was made Venerable on Fulton’s 4th birthday, June 28, 2008. We pray for a miracle through his intercession and eagerly anticipate seeing him declared a saint in our lifetime.

We also seek the prayers of Bl. Herman the Cripple. You can read his inspiring story here.  He was obviously given his title in a less PC era.

For more more information I recommend these websites:

Cure SMA

Fight SMA

Muscular Dystrophy Association

Gwendolyn Strong Foundation

If you are the parent of an child with SMA, or other serious medical condition, feel free to email me with any questions or just to vent. I understand! I’ve been there! It would be my pleasure to correspond with you: kellymantoan(at)gmail(dot)com

8 thoughts on “SMA

  1. Thank you for all this. I pray you will be blessed by peace and comfort from the One who grants it. One thing, the link to “Update 2/23/12” takes you to “Arriving at a Diagnosis 6/09”

  2. Thank you for sharing how this has affected the boys and the whole family. What a blessing Fulton is with his attitude and smiles! What grace God has bestowed on you and your family!

  3. Hi there. I have really enjoyed reading your story. I have a four year old son who was diagnosed with SMA type 3 last year. He is doing really well which continues to make us smile. We also have a 2 year old son, who at this stage seems unaffected by SMA. I am now also 15 weeks pregnant with our third child, who is also a boy, and with much sadness he has been diagnosed with SMA also. We are unsure to what extent he will be affected but can only hope that he remains like our 4 year old or better. I find hope in your words and am amazed by your strength. Thank you 🙂

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