Supporting Kyllian

Goal:

 USD $20,000

Raised:

 USD $24,370

Campaign created by Carolyn Rowley

Campaign funds will be received by Chelsey Casperson

Supporting Kyllian

Update #2 1/28/25:

Kyllian is officially out of the inpatient/hospital setting as of January 24th! She graduated from Brooks inpatient and was able to ring the standing up with support with all of her cheerleaders around her. She was also able to spend her first weekend at home in 94 days!

Kyllian continues to improve a little bit everyday. She partially passed her second swallow test and is now able to practice purees and puddings. Water is still hit or miss, but that's what practice is for 😀. Considering that within a month she went from not being able to swallow anything, to almost passing completely, that's amazing progress! She is also able to walk up and down stairs with 2 people supporting her and her walk gets a little steadier each day!

Her biggest hurdle continues to be overall coordination, which impacts everything a normal person does on a daily basis. Everyone believes she will still make a full recovery, but we continue to have a very long road ahead of us.

Kyllian started an intensive outpatient therapy program at Brooks in Jacksonville on 1/28 and will participate in it for the foreseeable future. While she attends this program, our family will trade off staying at the Ronald McDonald house in Jacksonville, allowing us to be close to her therapists and doctors.

Thank you for your continued well wishes, prayers and positive thoughts! Kyllian loves videos and pictures, so if you ever see anything you think she would love or want to send a video to say hi, she would love that!







Update 12/17/24 from Chelsey:

First and foremost, we wanted to thank everyone for their well wishes, prayers and generosity. The love we have seen all of you show for Kyllian over the past few weeks has left us absolutely speechless.

We wanted to provide an update on Kyllian now that we've reached a few new milestones. Kyllian had surgery for the 3rd attempt to internalize her brain drain on 12/10. Kyllian successfully received an ETV which places a hole in her third ventricle as a new way for her brain to drain. After monitoring her for a week her external drain was removed on 12/16! Since these two monumental milestones in her journey, Kyllian has stood up for the first time since her surgery on 10/31. She also has taken her first few steps with her physical therapist and started chewing ice to prepare her for a swallow study.

We have a long journey ahead of us but the next exciting step is hopefully getting out of the hospital before Christmas and moving to Brooks Rehab in Jacksonville for inpatient rehabilitation. Our neurosurgeon and PICU team have both told us this level of intense therapy is critical to Kyllian recovering. It will be very challenging for Kyllian but her determined, stubborn nature is already shining through and we know she will thrive!

Thank you for the continued prayers and well wishes. We truly believe Kyllian is our miracle and she continues to amaze us every day!




A description of what Kyllian has been going through as written by her mother Chelsey:

In December of 2023, our daughter Kyllian, slipped and fell running from her little brother, giving herself a severe form of whiplash called torticollis. After months of treatment, physical therapy, two neck braces, and doctors’ visits we were finally progressing toward discharge. In August we fully regressed to our original state. Kyllians school performance also started to decline. Our Orthopedist referred us to a Neurosurgeon and ordered an MRI of her full spine.

In October, a routine neck MRI showed something that looked like a blockage. Our Orthopedist called us and based on some of Kyllians symptoms, we were asked to come to the emergency room at the Children’s Hospital in downtown Orlando. A few hours later, Kyllian had emergency surgery to relieve severe cranial pressure that was thinning her skull.

After the emergency surgery and a few more scans, we found out Kyllian had two tumors on her brain stem. Our surgeon was able to remove the main cause of the blockage, a golf-ball sized tumor at the top of her brain stem. The other tumor is unfortunately inoperable and will be monitored for growth. Thankfully the biopsy showed that it is the lowest grade tumor she can have.

After the tumor resection surgery, Kyllian had a small stroke causing her to be intubated and unconscious for almost 3 weeks. She has had meningitis, a cold, and the flu since being in the Pediatric ICU. She is a fighter though, and has since regained consciousness and is now breathing on her own. She follows about 50-70% of commands on her good days and participates in daily speech, occupational, and physical therapy. However, she continues to remain nonverbal with a feeding tube at this current time.

We have a long road ahead of us and are currently waiting for her brain to heal some more after two failed attempts to internalize her brain drain. The external drain has to be replaced every 14 days to prevent infection or when it gets clogged, which has occurred a few times now. We are currently on drain number 6. Once Kyllian is over the hurdle and cleared by her ICU doctors, we will begin her next journey at Brooks in Jacksonville for inpatient neuro rehabilitation. All funds raised will go to help with Kyllian's long-term rehab to get her back to her sassy, silly self.

On behalf of our family, thank you in advance and for all of the prayers and well wishes so far. I truly believe it takes a village to get through this, and we have a pretty darn good one!


Recent Donations
Show:
Abe Newblom
$ 100.00 USD
17 days ago

Prayers to Kyllian and your family.

The Warren Family
$ 500.00 USD
29 days ago

We’re pulling for you Kyllian!!

Ashleigh Weber
$ 20.00 USD
1 month ago

Richard Hana
$ 500.00 USD
1 month ago

Prayers are with Kyllian and the whole family

Anonymous Giver
$ 500.00 USD
1 month ago

Prayers for peace, comfort and relief for you all. Keep up the hard work, Kyllian. You are amazing!!

Anonymous Giver
$ 50.00 USD
1 month ago

Bri Mastrogiovanni
$ 50.00 USD
1 month ago

Sending Kyllian and your family well wishes!

McLemore
$ 1000.00 USD
1 month ago

Sending lots of love and prayer.

Anonymous Giver
$ 100.00 USD
1 month ago

Anonymous Giver
$ 50.00 USD
1 month ago

Alice Wisener
$ 100.00 USD
1 month ago

Praying for Kyllian and the Casperson family!! Big hugs!

Robert Kirilloff
$ 100.00 USD
1 month ago

Anonymous Giver
$ 200.00 USD
1 month ago

Jacque Herrera
$ 100.00 USD
1 month ago

We're all cheering for you, Kyllian!

Art and Reta
$ 25.00 USD
1 month ago

Mike Perret
$ 50.00 USD
1 month ago

Prayers and love from our family to yours, Chelsey.

Dan Garrison
$ 250.00 USD
1 month ago

Continued prayers for Kyllian's health and healing and for the wellbeing of ALL of you.

Chris Bayned
$ 200.00 USD
1 month ago

Praying for you and your family

The Wilkins Family
$ 100.00 USD
1 month ago

Sending all the healing prayers to Kyllian!! Sending love and hugs to you and the fam Chelsey!! Love, Liz, Stan, Alex, and Lily

Lauren Drouin
$ 50.00 USD
1 month ago

Sending all the healing energy your way, Kyllian + a big hug to you, Chelsey!!

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