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Ally - 11 years old bday at school

WHO WOULD LIKE TO JOIN US FOR SOME FUN WHILE SUPPORTING GREAT CAUSES? Or show your support online with a donation in any amount? Every dollar counts and no donation is too small.

It’s the time of the year for Walk & Rolls to show your support of Ally and help raise some $$$ towards a cure and family support of those affected by SMA. Our MAIN GOAL is to get as many family and friends to join us at the walks. It really means the world to us to have family and friends walking with us in honor of Ally, her friends, and the many angels!!!

1) MDA Chicago Muscle Walk is Saturday, May 20th at Cantigny Park in Wheaton at 8:30am (I will find out exact starting time the walk starts). FREE and you make any donation you want.

Join/Donate – http://www2.mda.org/site/TR?pg=team&fr_id=23457&team_id=81216

2) CURE SMA IL Walk is Sunday, June 11th at Indpendence Grove in Libertyville, IL and my favorite. Registration and family fun begins at 8:30am with opening and cermony and walk beginning at 10:30. There will also be fun raffles, so let me know if you would like to donate an item. I try to help out with donations of raffles and food every year. $25 adult donation, $10 youth ages 4-17, free 3 and under (includes walk t-shirt while supplies last, so be sure to register online)

Join/Donate – http://events.curesma.org/goto/krajewski

imageUpdate on Ally’s 3 month follow-up from spinal surgery appointment in Cincinnati — ALL WENT WELL and we got home early this evening. Ally did a sitting up X-ray (which is a bit tricky since she has no muscle tone or head control but I wanted to be sure everything looked good in a sitting position). Dr. Sturm said everything looked really GREAT!! Her sitting X-ray went from an “S” curve in the 90s before surgery to 50s. Laying down estimate was while in hospital was from 70/80s to 40s (laying). He said the curve should be about the same laying or sitting up with rods, so I will see what the next one is laying. No matter what, the surgery was a HUGE SUCESS!!! He said she can be experiencing a little pain when sitting for long periods since she is only 3 months out but things are looking great and he saw no specific cause of pain, so some whining can be attitude too. He was also hopeful that the ability to urinate on her own will return with more time since it is starting and she has no trouble with her bowels. Ally is his first SMA child with long term urination complications, but he has had other patients experience this. It was neat that a surgeon from Israel was there shadowing Dr. Sturm. I wish the docs from Chicago would expand their minds on doing surgeries for type 1 SMA kids.

We also saw Dr. Stenger in endocrinology to check on Ally’s bone health. She has gotten pamidronate infusions in the past after having 3 fractures around the age of 5. Her DEXA scan scores were actually pretty good for an SMA child who does not bear weight (-2s) so we will repeat the Dexa in March and just keep a good eye on her bone health. If we do infusions in the future, it will be Zometa.

I cannot give enough praise to Ronald McDonald House Charities of Greater Cincinnati. We were soooo lucky to stay there two nights (across the street from the hospital). We had three donated meals and snacks there, comfy beds, a place to rest between appointments, balloon art, a walk in their outside area to calm Ally last night, networking with other families….. We made a small donation for our stay and I hope to do another Thirty-One fundraiser soon to pay it forward again.

Our next trip to Cinci will be in 3 months September 26-28th, then six months later in March and then annually.

I’m going to post all our pictures from this trip and xrays in case anyone missed the few I did. Hope this helps other SMA families and also our friends and family understand more about Ally’s trials and successes!! Thank you for everyone’s support!!!

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This information is from a previous post, with more details added….

ANYONE want to join us for a FUN Walk and Roll for the IL CURE SMA Chapter on Sunday, May 15th? OR MDA Walk on Saturday, May 21st? OR donate in honor of my daughter Ally (who is the bravest 10 year old most of us have ever met)???? Looking for family and friends to join us for fun and/or help once again…

1) Have FUN while helping Ally and others with Spinal Muscular Atrophy!!! This CURE SMA Walk and Roll and will be held on Sunday, May 15th at Independence Grove in Libertyville starting at 8:30/10-1:00. The Ally’s Angels team has gotten VERY small and we hope to re-grow with some family and friends joining us for FUN and time together. If unable to join the walk and festivities, please consider making a donation athttp://events.curesma.org/goto/ally. You can also click on the event button for even more information on the walk.

Once you click join team, there is a cost of $25 per adult, $10 per child age 4-15 & ages 0-3 free. This does include a walk t-shirt from the chapter, but we are also having Ally’s Angels Team shirts made for $3 each too. Of course the day of the walk, you can wear another shirt if you prefer.

I am a committee member for the walk and we are also looking for donations for our raffle tables. These can be items, tickets to events, gift cards…. To make a raffle donation or for more information about joining our team, contact Tina at 773-981-7211 (cell) or tina@angelally.com.

2) Our family will also be participating in a second walk for the Muscular Dystrophy Association (MDA) on Saturday, May 21st at 10 am at Catigny Park in Wheaton. This walk does not have a registration fee, but you should still click on the link to JOIN the Ally’s Angels team.  You can earn prizes based on donations and $ raised.  If you would like to join us for this walk or donate to the MDA which supports families and works towards a cure of SMA and 42 other muscle disorders, please contact me or go tohttp://www2.mda.org/goto/allysangels

 

3) Would you like to purchase an Ally’s Angels NEW team shirt for $3 to wear at one of the walks or to wear ANYTIME to show your support for Ally and raise awareness for SMA?

Ally's Angels 2016 shirt

ALL ORDERS NEED TO BE PLACED by May 4th. The sooner the better. I will hand deliver if close or you can pay a little extra if you would like it shipped to you.

Let me know sizes and you can PayPal or Chase QuickPay to tina@angelally.com or cash or check to me at 3614 N. New England, Chicago, IL 60634.

Shirt cost $3 – BRAND GILDAN (unisex t-shirt sizes used for most walks and schools)
Size youth S 6-8, M 10-12, L 14-16,
adult S-XL
*2XL & up $4.50

A BIG THANK YOU to my sister Sandi Maruszczak-Potempa and our cousin Heather Coleman for their help with the shirt & cost savings.

***We understand that we do MANY fundraisers for organizations that are incredible towards Ally and we know you can not contribute to all of them. Please pick and chose when you are able to help or join us at an event. Your support is GREATLY appreciated!!!***

The Krajewski Family

Ally’s personal website — www.angelally.com

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1st day substitute teaching since Ally’s spine surgery. 😊 Teaching 4th grade at Mary Lyons and then next week is a late Spring Break for Chicago Public Schools. Now, I also need to restart my Thirty-One live and online parties to supplement our family income. Ally is doing well, but still has complete urine retention and needs cathing every 4-6 hours. She saw a nephrologist and urologist this week, did bloodwork, x-ray, and ultrasounds of kidneys and bladder. Everything looks good and will hopefully just take time. She tolerated over 6 hours in her powerchair 2 days this week, so we will attempt partial-full days of school starting Tuesday 4/26 (after spring break) with myself and Ally’s nurses. Looking forward to getting back to “our normal routine.” Also hope to do some outings over spring break if anyone is interested in joining us.

PS – Be sure to look at the previous post about joining us in honor of Ally for 1-2 Walk and Rolls in May. Also let me know if you are interested in an Ally’s Angels tshirt for $3.

ANYONE want to join us for a FUN Walk and Roll for the IL CURE SMA Chapter on Sunday, May 15th? OR MDA Walk on Saturday, May 21st? OR donate in honor of my daughter Ally (who is the bravest 10 year old most of us have ever met)???? Looking for family and friends to join us for fun and/or help once again…

1) Have FUN while helping Ally and others with Spinal Muscular Atrophy!!! This CURE SMA Walk and Roll and will be held on Sunday, May 15th at Independence Grove in Libertyville starting at 8:30/10-1:00. The Ally’s Angels team has gotten VERY small and we hope to re-grow with some family and friends joining us for FUN and time together. If unable to join the walk and festivities, please consider making a donation athttp://events.curesma.org/goto/ally. You can also click on the event button for even more information on the walk.

Once you click join team, there is a cost of $25 per adult, $10 per child age 4-15 & ages 0-3 free. This does include a walk t-shirt from the chapter, but we are also having Ally’s Angels Team shirts made for $3 each too. Of course the day of the walk, you can wear another shirt if you prefer.

I am a committee member for the walk and we are also looking for donations for our raffle tables. These can be items, tickets to events, gift cards…. To make a raffle donation or for more information about joining our team, contact Tina at 773-981-7211 (cell) or tina@angelally.com.

2) Our family will also be participating in a second walk for the Muscular Dystrophy Association (MDA) on Saturday, May 21st at 10 am at Catigny Park in Wheaton. This walk does not have a registration fee, but you should still click on the link to JOIN the Ally’s Angels team.  You can earn prizes based on donations and $ raised.  If you would like to join us for this walk or donate to the MDA which supports families and works towards a cure of SMA and 42 other muscle disorders, please contact me or go tohttp://www2.mda.org/goto/allysangels

 

3) Would you like to purchase an Ally’s Angels NEW team shirt for $3 to wear at one of the walks or to wear ANYTIME to show your support for Ally and raise awareness for SMA?

Ally's Angels 2016 shirt

ALL ORDERS NEED TO BE PLACED by May 4th. The sooner the better. I will hand deliver if close or you can pay a little extra if you would like it shipped to you.

Let me know sizes and you can PayPal or Chase QuickPay to tina@angelally.com or cash or check to me at 3614 N. New England, Chicago, IL 60634.

Shirt cost $3 – BRAND GILDAN (unisex t-shirt sizes used for most walks and schools)
Size youth S 6-8, M 10-12, L 14-16,
adult S-XL
*2XL & up $4.50

A BIG THANK YOU to my sister Sandi Maruszczak-Potempa and our cousin Heather Coleman for their help with the shirt & cost savings.

***We understand that we do MANY fundraisers for organizations that are incredible towards Ally and we know you can not contribute to all of them. Please pick and chose when you are able to help or join us at an event. Your support is GREATLY appreciated!!!***

The Krajewski Family

Ally’s personal website — www.angelally.com

4/3/16 Settled at HOME!!!

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Home sweet Home!!! Ally is comfy in her bed, cathed and watching Katy Perry😍!! I want to personally thank Beth Lockwood , Annie Landefeld, Sherry Langland and the Cure SMA – OKI Chapter for your local support, gifts…..and listening ears while in Cincinnati. Thank you to all are friends and family who helped and/or sent gifts, meals and Thirty-One donations for Ronald McDonald House from afar and prayed for Ally. Thank you to my mom- Carol Neumann Smaron for soooooo much and friends-Brenda Scudder Zakrzewski, Jim Zakrzewski, Courtney Zak, Evelyn Schein, Jordan Schein for helping with Melissa. Thank you to Taylor Maruszczak for also helping with the dogs and house. We still have a long way to go with the recovery process and trying to resolve the urinary retention issue but we are HOME!!!! Ally will hopefully return to school in about a month and maybe for shorter periods sooner. One last thanks to God and the angels who watched over Ally and guided the medical professionals. 🙏😇

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Happy to be back in Chicago seeing this skyline. Crazy there is this much traffic on a Sunday afternoon, but focusing on the silver lining that we are 30 minutes from our home and Ally has done EXCELLENT on the 5-6 hour ride home (with some proactive, extra pain meds to keep her comfy). She and I have mostly stepped with only one stop to cough and suction her well.

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