Help 4-Year Old Saphara Get to AMSCI in July 2020

A Little About Saphara

My name is Tanya Fierro, Saphara's grandmom. Four years ago, my daughter found out at 25 weeks that her baby would be born with arthrogryposis multiplex congenital, or AMC for short, a rare genetic disease, and she would need to have a C-section.

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The doctors told us to prepare for the worst; that she would never walk or hold her own cup, but even worse that she may need to be on a ventilator.  Needless to say, when Saphara was born, she came out screaming. It was the best sound.

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Saphara is now four years old and has had six surgeries on both arms to release her elbows; she will need more surgeries in the future. She was also born without kneecaps and about a 70-degree bend in her knees.

She just turned four years old and finally learned how to walk very short distances on her own; however, for longer walks, she needs a wheelchair.


And sometimes, it's just easier to scoot across the floor.


Saphara has land and water therapy along with speech and occupational therapy (OT) twice a week. She has had castings; she also has ankle-foot orthosis (AFO) splints for her hands that she must wear at night.

What is Arthrogryposis Multiplex Congenital - AMC?

AMC is a rare, musculoskeletal genetic disease involving joint contracture in two or more areas of the body and includes muscle weakness. It occurs in one out of every 3,000 live births.

There is no cure for AMC. The treatments involve casting, therapy, and multiple surgeries. It can be costly to travel to different doctors, hospitals and even different states in order to have the right treatments.

Why Is the AMCSI Conference Important?

Once a year the Arthrogryposis Multiplex Congenita, or AMC, Inc., holds its annual AMCSI Conference. "Once a year we meet, bringing together professionals, doctors, physical therapists, and occupational therapists. We provide workshops and invite people throughout the world to learn, share, laugh, cry and grow as one community."

These conferences are an invaluable resource for those who have AMC and those who care for a loved one with the condition. It enables them to stay informed of current and future treatments as well as how to deal with raising a child with AMC so they can live a full and productive life.

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As you can see from the photos, Saphara is still a happy little girl, full of fun and life, in spite of her physical condition. Attending these conferences gives us the information and tools we need to make sure she stays happy and full of life as she grows up.

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Since I have primary care duties for my granddaughter, Saphara, and her little brother, Ayden, while their mother works full-time, these conferences are critical in helping me help my daughter raise Saphara. We were unable to attend last year's conference due to financial constraints, so I decided to launch a GoFundMe to help raise the funds needed for Saphara, Ayden, their mother, and me to attend this year's conference.

The 15th Annual AMCSI Conference is in Scottsdale, AZ July 1-4, 2020.  Since we live in Pennsylvania, we need funds for air travel, lodging, and food for the four of us. We also need to rent a vehicle while in AZ.

 
Any assistance you can provide is extremely and gratefully appreciated! Thank you!!!

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Donations

  • Amanda C 
    • $50 
    • 4 mos
  • Dennis McIntyre 
    • $50 
    • 4 mos
  • Anonymous 
    • $120 
    • 4 mos
  • Anonymous 
    • $20 
    • 4 mos
  • Anonymous 
    • $100 
    • 4 mos
See all

Organizer

Tanya Fierro 
Organizer
Mohrsville, PA
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