Get Scarlett Moving!

 
Raised: $37,141.00
Goal: $40,000.00
 
 
 

Created by

Rachel Frosaker Sepe

270 Friends

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Scarlett Sepe was diagnosed with Spinal Muscular Atrophy on December 14, 2011 at the age of 8 months. SMA is a degenerative, motor neuron condition affecting all voluntary muscles in a p... more

 
 
 
 
 
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Updated posted by Rachel Frosaker Sepe 20 days ago

Can't believe we started this page one year ago. On the eve of Scarlett's third birthday we are beyond blessed and thankful for all of the support. This page has been shared over 1,000 times. Amazing

 
 
 

Updated posted by Rachel Frosaker Sepe 5 months ago

$58 away from $35,000. Unbelievable

 
 
 

Updated posted by Rachel Frosaker Sepe 5 months ago

7 months ago we began to fundraise for a new car, Scarlett’s power chair, and the special lift required to get her chair in and out of the car. We launched her page at www.gofundme.com/2f4suw and prayed that many would be called to assist in our efforts. As of today, we have raised almost $35,000! Whether you shared our site, made a donation, or cheered us on, this long overdue post is for you!
The first step was her power chair. As soon as we raised a sizable amount, we applied for her chair and we able to cover what insurance didn’t. Scarlett received her chair right before Fourth of July and has been learning how to drive, turn, and stop. She is doing so well and even participated in a 100 yard dash last weekend. To see her drive is amazing and she loves being able to “run away” from us!
At the end of summer, we had a decision to make. We could either take the remainder of the funds raised and put it toward the car, or wait until we had all the money raised and hope we’d find another vehicle that would work. The tough part was we had selected the vehicle and chair at the same time to make sure they would work together plus allow room for our family of 5. We had been working with Wickstrom Ford here in Barrington and they were in need of moving the vehicle we had on hold off their lot to make room for new inventory. The exact car we needed would be hard to find again so it was a tough decision to make. Knowing we had the chair, we couldn’t risk losing a car that would work so we decided to move forward.
The final step was the lift. We were fortunate to secure funding from the state of Illinois, but like all things that involve the government, the amount of red tape and hoops we had to jump through made me feel like I had acquired a third job. Finally, though, after a few months of work, the car was picked up and the lift was installed.
We have slowly let Scarlett out with her chair in places we know she can handle. She is still only two and having her drive such a large and expensive piece of equipment makes me nervous. We marvel at how quickly she is figuring out navigation. For now, many of her controls are only accessible with our help, and we hope by summer to be able to turn over full control to Scarlett.
We’ve come a long way in 7 months, but still would like to reach our fundraising goal. We would welcome supporters of Scarlett to continue to share our link. With all of the scams on the internet today strangers can be leery to donate. By showing them our link and blog, we hope it demonstrates that Scarlett’s story is real and that the money donated is being used for its intended purposes. We’d like to pay for the remainder of the amount of her vehicle and begin the process of creating an accessible home so she can use her chair inside as well as out. For now, her chair is stored daily in our garage because we can’t get it in the entrances of our home. Come winter, the chair will have to be moved to a heated location making it so she can’t use the chair every day. SMA is a marathon and the miles of needs keep coming for Scarlett. We continue to be grateful for everyone’s support and help. We wouldn’t be anywhere near where we are today without family and friends who keep pushing us to give Scarlett the best life possible. Thank you for getting Scarlett moving!

 

 
 
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Created by Rachel Frosaker Sepe on March 26, 2013


Scarlett Sepe was diagnosed with Spinal Muscular Atrophy on December 14, 2011 at the age of 8 months. SMA is a degenerative, motor neuron condition affecting all voluntary muscles in a person’s body. SMA is the number one genetic killer of children and has no treatment or cure. But, with proper care from a team of doctors and therapists, Scarlett has the chance to live a long and happy life. You can read more about Scarlett’s journey with SMA at www.wishesforscarlett.com
Scarlett cannot move by herself and requires assistance for every activity in her day. She has never crawled, pulled up, stood independently, or walked. Scarlett does have limited use of her arms and an incredible, creative mind. She is smart, loving, funny, and such a joy to be with. Scarlett desires to be able to move about outside and be able to do things like chase her brother and sister or navigate a park or zoo on her own rather than be confined to a stroller. We also wish for her to be able to go to school and access her environment without barriers to her success.
As Scarlett gets older, her power chair will become her sole means of transportation. She will become too heavy for us to carry long distances and too weak for manual chairs. We will not be able to take her to appointments or have her leave the house without her power wheelchair and a vehicle to transport the chair. On March 31st, Scarlett turns two and is ready to take on the world independently.

In order to make this a reality, Scarlett is in need of:
* a power chair to drive around in (part of which will not be covered by insurance) http://countries.permobil.com/USA/Products/Pediatric/Koala/
* a vehicle to transport her chair
View IMG_1487.JPG in slide show
* a Bruno lift that will allow us to safely lift her 300 pound chair in and out of the vehicle http://bruno.com/vehicle-lift-curb-sider.html


We have partnered with Wickstrom Ford, a local car dealer, to locate a vehicle to meet our needs. We found a Ford Expedition XL that will safely fit her chair and allow a growing family of 5 to go places together with room to grow! We estimate the total cost for our portion of her power chair, the SUV, and the lift to be $70,000.
Please help our efforts in any way possible no matter how large or small your contribution. Help us give Scarlett her dream! Remember to use the GoFundMe “share” tools to spread the word to everyone! Let’s get Scarlett moving!
To continue to read Scarlett’s story, “like” her Facebook page at https://www.facebook.com/pages/Wishes-for-Scarlett/182231591882337?fref=ts
 
 
 
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3 Comments

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Nothing gets posted to your wall. Only your Facebook name & photo are used.

this is my granddaughter ERIS CSTRO she has SMA 2. SCARLETT NEEDS HER POWER CHAIR . MAY GOD DO MIRACLES ON THESE CHILDREN WITH SMA .

posted by Janie Rosas 12 months ago

I don't know her, but I don't need to. I just know she deserves this.

posted by Sandra Vaisnoras 12 months ago

Lets help this little ANGEL and her family...It doesn't take much to make a difference !!

posted by James Place 12 months ago

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Recent Donations (266)

$37,141 raised by 266 people in 12 months.

$20.00

Anonymous

16 days ago

 

$50.00

Andrea Hockfield

20 days ago (Offline Donation)

 
 

$50.00

anonymous

20 days ago (Offline Donation)

 
 

Happy Birthday Scarlett!

 

$10.00

Melody Blinkmann

27 days ago (Monthly Donation)

 
 

$20.00

Katie Bringer

1 month ago

 
 

God bless your family!

 

$10.00

Melody Blinkmann

1 month ago (Monthly Donation)

 
 

$200.00

Anonymous

2 months ago

 

$10.00

Melody Blinkmann

2 months ago (Monthly Donation)

 
 

$600.00

Photography Fundraiser

3 months ago (Offline Donation)

 
 

$10.00

Melody Blinkmann

3 months ago (Monthly Donation)

 
 

1-10 of 266 donations

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