Pennies for Penny! A fund to help diagnose!
$250 Raised
9 contributors
4 Years running
Our daughter Penelope had been in and out of hospitals and ER's for quite some time now. We feel like we are lead in a circle only to end up at our starting point. I guess it is partly because her symptoms seem so multi-systemic that it can be hard ... More ...

Our daughter Penelope has been in and out of hospitals and ER's for quite some time now. We feel like we are lead in a circle only to end up at our starting point. I guess it is partly because her symptoms seem so multi-systemic that it can be hard which path to choose first.

As a gifted and talented toddler, Penelope
-started talking and signing to get needs met at 4 months
-reading at 10 months
-by 12 months had mastered reading and speaking hundreds of words.
-at 3 years old Penelope reads at well over a 2nd grade level with amazing comprehension and imagination

Somewhere after she began to walk, her fast development both physically and cognitively went from being above average to below dangerous especially as far as her weight was concerned. This all correlated with our weening her from the breast gradually and introducing new foods.

Within a few months:
-she began showing signs of severe gastric distress and anything she ate made her physically ill.
-She began showing signs of disconnection between the left side of her body and her gate changed.
-she began limping as well as severe toe walking.
-We have also seen signs that she is experiencing numbness or tingling in her extremities.
-Her balance is dangerously uncontrolled.

She can go from being high functioning to almost non-functional within a day depending on whether or not she has had solid foods.
-She will cry for hours in pain and struggle to communicate during these "spells"
-often stuttering and slurrig her words and pointing rather than talking in full sentences as she can do on good days.
-She can't sleep through the night and wakes every hour on the hour crying and confused, unable to be soothed.

The rashes that she can have during a reaction vary from eczema to open weeping sores and it can hurt to urinate as well as pass stool (if she isn't severely constipated which seems to happen after every reaction)

We have had issues with her stool turning black, severe constipation leading to visible blood in the stool, her body swells and her belly puffs out till no clothes fit her. She can gain many pounds quickly (we realize now that it is fluid retention) and it can take over a week for this to clear. Usually by the time it does she's lost all the weight that she gained during the flare up and a few more pounds.

She currently reads at over a first grade level and has thousands of words in her vocabulary. We mastered the Dolch sight words in only one day when she was a year old.

Our local Hospital, AI Dupont Nemours...has unsuccessfully tried to treat her not once...not twice...but four times now . We have finally found one doctor to follow through her medical issues but he is as baffled by her as everyone else has been. She has a doctor now that is dedicated to helping diagnose her but we have no answers yet.

We are left wondering where we can go now to get our baby diagnosed. and what is worse, she is showing reaction to her medically necessary formula since they changed processes in some of the other formulas. Based on her reactions we fear a cross contamination is taking place and we are now trying to buy back dated and unexpired cans of the formula to hold her over until the FDA can get us some answers! Regardless, we know that this formula isn't going to suffice for her much longer and we don't know what to do.

Please take the time to contact me if you have any ideas on how we can get her helped! She is our blessing...our light...and as a family her medical condition is costing us more than our own health.

We are fighting to keep our house and afford her medical care! We are fighting to stay together as a family but as you know food permeates every fabric of American is hard when your child wants to eat something as simple as a banana and you know that it isn't possible without adverse reactions.

Any help you can offer is greatly appreciated!

This fundraiser is set up so that we can:
*Pay for her specialized formula at 42 dollars per can!
*Start paying medical bills
*Give us funds to be able to travel to specialists and hospitals out side of our insurance area.
*allow us to use outside specialized laboratories in testing procedures
*Set up an emergency fund to support us if we in fact end up in the hospital again.

UPDATE: November 2012
*Penelope is entirely formula fed currently and seeing a wonderful OT and PT on a regular basis. Her doctor has his eyes focused on a few fairly rare conditions that affect digestion and metabolic function and in the next few weeks she will undergo many over night stays in the hospital with testing. Her doctor wants to rule out HFI and CSID.

We just want our child to play without issues with environmental allergies that in turn upset her digestive process. We have noted a reaction in her new formula and are now scrambling to get old label cans. Since going back she is much more stable.

Penelope's formula company has changed her formula...we've begged and gone back and forth with their legal and medical team to try to get them to remake enough formula to get her through these important growth years with nothing more than more red tape to go through.  We are searching for something that can sustain her because the formula causes so many issues now :(

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