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Make Your Own!

A medical fund forCharlotte Rose MacNeil

$44,247 given of $70,000 goal

Charlie's Angels

Started by: nicole rotti

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Upon Charlottes first diagnosis things have changed drastically. When our daughter first got sick we were led to believe she would recover in a matter of months and we would be home quicker than this. It’s been since July 5 that we’ve been by Charlottes bedside from hospitals to rehab.

Charlottes Transverse Myelitis was so severe it caused damage to her spinal cord leaving her paralyzed from the neck down, with lots of other complications in between. She’s now vent dependent, fed from a g-tube and has a cardiac pacemaker. We are currently in Baltimore working hard to allow her to recover to her fullest potential. With this spinal cord injury we are looking at a very long road; at home nursing, out of pocket therapy sessions and endless amounts of equipment ranging from small to large (eventually including a handicap accessible van).

It’s been months since we’ve been home but are hoping to get back just in time for christmas.

We can’t thank you all enough for the support you’ve given us these past months.

ORIGINAL POST:

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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Patricia Pavone — 40 weeks ago

God is great... Believe...

Joyce Pollack — 44 weeks ago

What a cutie! Prayers to your family. Hope she is home for Christmastime.

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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Hassan Alisa — 27 weeks ago

God is great, he will continue guide and protect her, Believe in God and also believe in yourself too, it will be fine soon.

Maya Rubalcaba — 1 year 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 — 1 year 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 — 1 year ago

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

Fred-Flora Cantwell — 1 year ago

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

Nancy Schuster — 1 year ago

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

Nancy Schuster — 1 year ago

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

Marcia Dillard — 1 year 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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556 Supporters

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  • John W. Magill14 weeks ago Best wishes.
  • Anonymous17 weeks ago
  • Peter Crowley20 weeks ago Best wishes Trevor. I hope for the best for your family!
  • Bryan & Deb Fancy21 weeks ago Best wishes.
  • Merrill Mac Innis22 weeks ago The strong will of the Mac Neil women is legendary. You are a fearless strong girl who will not back down and will keep moving forward. You definitely are a Mac Neil. Merrill
  • Aracelis Guadalupe22 weeks ago Best wishes. God bless the family
  • Jennifer Alex26 weeks ago Share your campaign with thousands of people on this site to get more donations https://aecopa.es/play.php?dir=prime&product_id=14703&join=BiVMcIF
  • Anonymous28 weeks ago
  • David Bulkley31 weeks ago Sorry for the delay, Trever. I’ll catch up with you soon. Coach Bulks
  • Gifted for Lily's Birthday31 weeks ago Always in our thoughts.
  • Show 546 more supporters