Young Girl Endures Fibrodysplasia Ossificans Progressiva FOP
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[Young Girl Endures Fibrodysplasia Ossificans Progressiva FOP]
This is F.O.P.
Erin was born in August 2005.
Although she was born with F.O.P. symptoms, she was not diagnosed until June 24, 2008.
Early symptoms were:
Malformed big toes, Stiffness throughout her body, Gross motor and fine motor delays, Balance issues which caused falls and head swellings, Unexplained bone growth on skull
First nodule presented on the back of her skull.
Full face flare-up that was thought to be an allergic reaction.
Now 10 years old, Erin’s body has changed drastically due to F.O.P.
This was Christmas 2007 before her F.O.P. became aggressive…
Dad: Alright, we have to start over. Erin.
Children: Okay, here we go. 1, 2, 3.
She had several big flare-ups that led to her diagnosis on June 24, 2008.
What is Fibrodyplasia Ossificans Progressiva?
One of the rarest, most disabling genetic conditions known to medicine, it causes bone to form in muscles, tendons, ligaments and other connective tissues.
Bridges of extra bone develop across joints, progressively restricting movement and forming a second skeleton that imprisons the body in bone.
F.O.P. is characteristically pinpointed by the malformation of the big toes.
Erin begins to lose range of motion in her upper body.
Her hips and knees were unaffected.
Can you help me?
Children: Source: LYBIO.net
I got something from my new bed. Maybe like a new cushion.
Erin’s range of motion in her upper body is very limited.
Her right arm has decreased mobility and her hips and knees are minimally affected.
What do you think it is Erin?
Well, open it up.
You just know it’s a big box.
No, I can see it’s real big.
Barbie dolls…. barbie dolls.
Erin: Source: LYBIO.net
Oh my God!
Erin started vomiting Christmas Day night. Over the next few days she became more lathargic and was passing blood through stools and vomit. She was hospitalized at Seattle Children’s Hospital…
After two blood transfusions, a feeding tube was inserted. She had “failed to thrive” since the age of 2 years.
Within a few weeks, Erin’s left side flared-up.
She was accepted into a clinical trial out of UCSF and began taking an investigational drug that we hoped to stop any new bone growth.
Over several months, Erin travelled to UCSF for testing and treatment.
This was a blind control study where she had a 25% chance on receiving the placebo.
Right leg: unaffected
Left leg: swollen from hip down to ankle
Her body was in so much pain. Not only was the hip, knee, and ankle swollen, her back was flaring-up too.
Phase 1 of the clinical trial was completed in May 2016. Phase 2 will begin for Erin with her next flare-up.
Much to our disappointment, Erin developed new bone growth in her leg. We may know later in 2016 if she took the investigational drug or if she took the placebo.
As we wait for Phase 2 of the clinical trial, Erin recently came down with pneumonia.
She is recovering but is still weak.
Here is how much her body has changed in such little time…
Her level of care has drastically increased.
Everyone in the family is pitching in where they can.
We are in need of special care for Erin during the day.
Our child’s life is forever changed because of this condition.
We strive to make her life comfortable and fun.
That is not always easy.
Erin had several good years before F.O.P. took her body captive.
Now a big chunk of her independence has been taken away and her health is compromised.
You know actually there is a beach —
The list of needed equipment is growing and not everything is covered by insurance.
Our greatest need right now is a wheelchair accessible van so Erin can travel more comfortably.
Please consider donating to Erin’s Crownfunding page or donating to your local FOP organization.
Links are available down below.
Thank you for watching.
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