Wednesday, January 25, 2017

Baby Jackson: An Update & Fundraiser

Update as of 2/14 from Amanda's Facebook:  first of all Jackson says he's sorry to everyone he scared yesterday with his episodes & hopes each of you have a very blessed & Happy Valentines Day; he sends his slobbery kisses to all of you!💋💋♥️♥️

Jackson had a rough night/morning but so far since about 5:00am he's been holding steady and resting. He's grumpy but who wouldn't be after the day he had yesterday.
If y'all are still wanting to donate please do so on our PayPal, GoFundMe or mailing.
We appreciate each and every one of you! I can't get through all the comments and messages but please know I've looked and read them! Y'all are amazing.

You may remember this post about babies Charlotte and Jackson from a few weeks ago. If you don't remember it or haven't checked out, please head over here to do so.

Baby Charlotte is doing well! Her recovery is going and she's a happy little thing.

Baby Jackson, on the other hand, is not doing well. He ended up back in the hospital and his genetic testing came back. His testing revealed that he has Type 1 Spinal Muscular Atrophy (SMA).

Type 1 SMA symptoms are usually present at birth or by 6 months.
"When SMA symptoms are present at birth or by the age of 6 months, the disease is called type 1 SMA (also called infantile onset or Werdnig-Hoffmann disease). Babies typically have generalized muscle weakness, a weak cry and breathing distress. They often have difficulty swallowing and sucking, and don't reach the developmental milestone of being able to sit up unassisted. Typically these babies have two copies of the SMN2 gene, one on each chromosome 5. Over half of all new SMA cases are SMA type 1." (mda.org)

SMA type 1 symptoms can be mild to severe. "Children who have noticeable SMA symptoms at or shortly after birth usually are very weak, have difficulty breathing, sucking and swallowing, and never reach the developmental milestone of being able to sit on their own (type 1 SMA or Werdnig-Hoffmann disease). In the past, children with type 1 SMA usually didn't survive more than two years, but today this is not always the case. With technology such as mechanical ventilation and feeding tubes to assist with breathing and nutrition, children with type 1 SMA can survive for a number of years."  (mda.org)

Jackson and his parents have already spent so much time in the hospital and they may have the option to go home soon. Unfortunately, he is still having so much trouble breathing, so when he goes home, he'll go home on his CPAP. His mom recently posted that when they go home, it's likely that Jackson will be on hospice. **Update since this was written...Jackson coded this morning at 9 and was revived, but the drs don't know if he will make it through tonight.**

I know this momma and Jackson from a wonderful mom's group and he was born just a few weeks before Lewis. It breaks my heart to see and hear what they're dealing with right now. Please continue to keep this family in your prayers. And if you feel led to give, there are a few options.

Option 1: PayPal
Jackson's family is accepting donations via PayPal. PayPal does not charge a service fee to Jackson's family to deposit into their bank account. The PayPal email address is jacksoncook0220@gmail.com

Option 2: GoFundMe
Jackson also has a GoFundMe account set up. Here's the link to his page.

Option 3: Fundraiser!
A sweet mom in our group prints shirts and has started a fundraiser for Jackson. I've ordered a onesie for Lewis to wear. They look like this:

front

back

Onesies are $15 and tshirts are $20. You choose the size and the color. Please contact me if you'd like to order one and I'll get you in touch with the momma who makes them.

Again, please be praying for this sweet family.

Thank you!

Happy Wednesday!

4 comments:

  1. jackson is my little cousin and i have been praying hard wish there was something i could do. Just dont know what to do..

    ReplyDelete
    Replies
    1. It's hard to know what to do. Pray and support them is the best we can do. If you want to order a tshirt, you can!

      Delete
  2. CAn I please order a shirt and onesie?

    ReplyDelete
    Replies
    1. You certainly can!

      Here is the link for ordering a onesie: https://www.etsy.com/listing/507822185/jackson-fundraiser-onesie-or-toddler-tee

      And the link for a t-shirt: https://www.etsy.com/listing/494333026/jackson-fundraiser-adult-tee

      Delete

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