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Started by: nicole rotti
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
Posted by nicole
August 18 at 9:22am
Posted by nicole
July 21 at 12:55pm
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Hassan Alisa — 5 years 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 — 5 years ago
Hold her as much as you can. Put music if possible. Talk to her. Wish there was more ❤️
Posted by nicole
July 19 at 7:56am
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Denise Risedorf — 5 years 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 — 5 years ago
We will continued prayers and thoughts from your Cape Breton Family!
Fred-Flora Cantwell — 5 years ago
We will continued prayers and thoughts from your Cape Breton Family!
Nancy Schuster — 5 years ago
Prayers and thoughts....stay strong....
Nancy Schuster — 5 years ago
Prayers and thoughts....stay strong....
Marcia Dillard — 5 years ago
Sweet Charlotte remains in my prayers!
Posted by nicole
July 15 at 7:13am
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Patricia Pavone — 5 years ago
God is great... Believe...
Joyce Pollack — 5 years ago
What a cutie! Prayers to your family. Hope she is home for Christmastime.