Sherian Kaneaster McCoy I want others to know that just because he plays, works or socialized “normally” doesn’t mean he’s not in pain or sick.
August 31 at 10:54pm via mobile · Unlike · 8

April Fraser We are their voice. They look to us for answers and we can’t give them one. But we are a force to be reckoned with because nothing hurts more than to see your child in pain and we will not stop until we find a cure. As a parent,
I am humbled by these children and their strength and spirit. May God bless them all❤and I pray that all of their suffering comes to an end soon.
September 1 at 12:12am via mobile · Unlike · 7

Regina Statler These children are so precious…their daily fight and struggle is an inspiration and as a proud parent of two children who have CAID…I am hopeful for the future and a cure….
September 1 at 11:01pm · Unlike · 3

Eugenia Romero I often feel powerless as I cannot make her PFAPA syndrome go away. What is scary for some parents, it’s normal for us. Yet, I do not treat her as she is disabled. She is resilient, strong and beautiful. She has wings and I hope she can fly as high as she wants for I know that not even this can stop her.
September 2 at 11:25am · Unlike · 5

Denise Boyce My daughter also has PFAPA the one thing I wish people would know is that it is a “real” disease, she may look healthy 20 days out of the month but for the 4 days that she gets a PFAPA attack she is in pain & full of fever. The thing is with this disease you never know when her body will turn aginst her & attack her good cells. She is a trooper & takes her own temps, keeps track of them she an amazing 8yr old.
September 2 at 1:24pm · Unlike · 4

Melanie Baker How amazing she is! So strong and can handle so much that others would break at the first day of. Lives life to the fullest on her good days and fights until she can’t fight anymore in the bad days. She fights so hard to be normal and for others not to know. The way she can find joy in just the little things and just keeps on keeping on!! 15 years old and first flare at three months and she is more beautiful today because of who she is inside and out.
September 6 at 3:30pm via mobile · Unlike · 2

Alicia M. Germain My son had PFAPA for 3 years before we had his tonsillectomy at 4 years old. He has been fever free since. CAID steal our kids livelihood and precious family time. He was so sick 5-10 days each month for 3 years and it was taking such a toll on our family. We almost lost jobs. It affected the whole family in one way or another. I still believe that he has a very low threshold for pain due to all the pain meds he took for fevers. He’s also not very good at self-soothing because when he was sick so much he needed us to do that for him. The illness has shaped who he is today. I hope that he remains in remission knowing that the other side of this is awful.
September 6 at 3:44pm · Unlike · 2

Tracy Wilcox Amazing soul who fights severe inflamatory issues daily. While she does always use her wheelchair, so you may not know she is up and walking yet rates herself an 8 on the pain scale! Many of our children may ‘look ok’, but it does not mean they not locked in a daily battle with their bodies.
September 6 at 4:22pm · Unlike · 2

Lisa Rielly Redington CRMO may be big…..but it will not keep her down. Jessica is tough and sassy and sweet and caring. For those on the outside she looks so normal – but there are days on the insid…See More
September 20 at 1:26am · Unlike · 1

 

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