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A medical fund forCharlotte Rose MacNeil

$33,863 given of $15,000 goal

Charlie's Angels

Started by: nicole rotti

952 shares

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    Post Campaign to a Blog/Website

On behalf of our 16 month old daughter, Charlotte, my boyfriend Trevor and I are asking for help from our friends and family. On Thursday July 5, I found our sweet girl unresponsive and limp in her crib. After spending countless hours in the pediatric ER at UMass University, doctors where finally able to diagnose Charlie with a very rare condition called Acute Transverse Myelitis. This condition has caused inflammation of white matter in her brain stem down into her spinal cord to her T9. This has left our active and energetic baby to be temporarily paralyzed from the neck down.

Right now, Charlie is stable and on a ventilator to aid in her breathing so her tiny body is able to rest as she heals. She has received five doses of steroids to help reduce and control the inflammation. After her fifth day in the hospital, they started treating her for Guillain Barre Syndrome. They are using IVIG, a therapy used to help people with a weakened immune system and to fight off infections. Doctors are hoping this approach will get rid of the swelling and will allow Charlotte to make a full recovery. Due to the severe amount of inflammation, Charlie's heart and blood pressure have begun to trigger an issue in her battle. These new issues have pushed us to getting her transferred to Boston Children’s Hospital.

After her hospital stay we are anticipating several months of rehab. Unfortunately, we don’t know how long it will take for her to gain the use of her limbs, as we’ve been told this will be a marathon and not a sprint.

We have been out of work since the onset, staying at our daughters bedside. Although Trevor has to return to work soon, he will be commuting daily back and forth to Bostons Children's to support Charlotte and staying over on his days off. I will be taking a leave of absence from work until we are sure Charlotte is stable enough to have the ventilator removed and therapy started. These donations we receive will help the cost of medical needs necessary, Trevor traveling back and forth to work, and any unforeseen expenses along the way. We are still in need of positive energy, prayers and love. Our world has come to a complete stop and our emotions are raw as we struggle to overcome this traumatic time. Our focus continues to be Charlotte and her journey.

Sincerely,

Rebecca Conway

Latest Update

it’s been a while since my previous update. trevor and I have started a blog on facebook called “Life’s crazy book; Charlies Chapter”. it allows us to write much more than it does here. please follow along there for more updates and picture there!

Posted by nicole

August 18 at 9:22am

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After 16 long days of not being able to hold our sweet girl, both Trevor and I were finally able to and our hearts couldn’t be more full. Monday Charlie will start a new treatment called Plasma Exchange to treat for the original diagnosis of ATM. If her breathing does not improve enough for her to be stable she will need to get a tracheotomy. As we are hesitant and nervous we are hopeful that with time and therapy we can restrengthen her respiratory. Today she responded to her reflex test by picking up her right knee and clentching her upper thighs. We are celebrating every little victory along the way! Thank you for your continued thoughts and prayers

Posted by nicole

July 21 at 12:55pm

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Maya Rubalcaba — 8 weeks ago

Hold her as much as you can. Put music if possible. Talk to her. Wish there was more ❤️

Since arriving to BCH we have seen small improvements with Charlotte. She still has inflammation of the spinal cord in the white and gray matter. The cause of this is still unknown. Charlie's case is unusual because it mimics both Acute Transverse Myelitis and Acute Flaccid Myelitis. AFM was a new diagnosis she received upon our arrival, it was heartbreaking to hear that only 1 in a million children have this condition and Charlotte was affected. Our main focus now is getting her better. As this long road continues we hope to keep moving forward to help Charlie be stable enough to go into a rehab facility. She will need intense PT, OT and respiratory therapy. Most important is that Charlie's brain has not been affected and she is still our little girl who is full of life. Her physical body has been compromised from the neck down but we are confident that all the prayers we are receiving help in her fight. Together we will give her the love and support she needs to beat this.

Posted by nicole

July 19 at 7:56am

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Denise Risedorf — 8 weeks ago

I pray for Charlie to be restored from head to to toe in JESUS NAME. My thoughts and prayers are with you.

Fred-Flora Cantwell — 9 weeks ago

We will continued prayers and thoughts from your Cape Breton Family!

Fred-Flora Cantwell — 9 weeks ago

We will continued prayers and thoughts from your Cape Breton Family!

Nancy Schuster — 9 weeks ago

Prayers and thoughts....stay strong....

Nancy Schuster — 9 weeks ago

Prayers and thoughts....stay strong....

Marcia Dillard — 9 weeks ago

Sweet Charlotte remains in my prayers!

Trevor and I are so overwhelmed with the continued outpouring of love, support, and prayers that we are being showered with. We cannot tell you what our hearts are feeling right now because we have so many emotions swirling around, but please know that we are so humbled by all of you that have become Charlie's Angels. Today, Charlotte will be transported to Boston as our next journey begins.

Posted by nicole

July 15 at 7:13am

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418 Supporters

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  • Bryant Family1 day ago You are in our thoughts and Prayers.
  • Elizabeth St. Pierre5 days ago Best wishes.
  • Laurene Nichols5 days ago Prayers for your beautiful baby girl.
  • Patty Lanzillotti1 week ago Praying for Charlie’s medical progress.
  • Maureen Massad1 week ago Best wishes.
  • Anonymous1 week ago
  • Tammy hansen and debbie hansen1 week ago We love you becky and charlie. Thinking of you always
  • Mammy and Bumpa1 week ago Sending prayers, strength and positive energy to Charlie and family.
  • Kristyn Willis2 weeks ago Our family has heard about all you are going through and send our love and hope for a very meaningful recovery.
  • Girard & Associates2 weeks ago Best wishes.
  • Show 408 more supporters