Hope for Maddie (Medical expenses/care)

$4,185 of $10,000 goal

Raised by 78 people in 56 months
Hi my name is Erin Hays and I am looking for a diagnosis and cure for my 9yr old Maddie. Her health issues started back in November 2013 when she broke out with the first rash on her face that has now become crippling for her and the doctors are lost! It covers her whole face to the point her eyes swell shut and it travels down her neck. It has even started to go down her arms, stomach, and legs! We have been to specialists after specialist and to the ER/hospital more times then a child should ever go in a lifetime. She has been "poked" a lot for tons of labs and nothing gives a answer or indication to what the problem is. Besides the horrible itchy/burning rash she has swollen lymph nodes in her neck, under arms, groin and in her abdomen. She is also suffering from nose bleeds, abdominal pain, blood in vomit and stool, apnea spells, and weight gain. I have traveled hours away to see different doctors and though they seemed very concerned no one can give us a answer or give Maddie any kind of relief. My husband and I have gone though our savings account paying for medical bills, specialist fees and countless medications that were not covered by insurance, and not to mention travel expenses to and from the children's hospital that is almost a hour away from where we live.  I have 4 young and precious children and its become very difficult to get by with just my husbands income. I loved my job as a photographer but I have had to turn clients away and limit myself due to my daughter health condition and having to make sure she gets the care she needs. My family will be more then apprecaitive for any finacial help donated but more importantly please help us find her the doctors she needs so we can get Maddie better!
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It's been awhile since I updated on here but I wanted to let everyone know that Maddie and I will be traveling to the children's hospital of Wisconsin Sunday for a full week of extensive and invasive testing and operations. Please continue to pray for her and for safe travels as we make this journey to get answers for Maddie. Thank you all for your continued support
Maddie and her best friend Addie
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Looks like Maddie will be traveling to Wisconsin for the Rare and Undiagnosed Disease program at the Childrens Hospital of Wisconsin. We are just trying to figure out details but the doctors estimates within the next month or so. They will be sitting down and meeting with their team of 10 specialist and pediatrician and coming up with the official game plan within the next week or two!!! Can't wait and hopefully we will finally get some answers. But now the task of prepping for a week long trip out of state for the medical testing!!!
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We are still trying to get answers and the doctors are working hard to figure out what Maddie is suffering from. Thank you all for your donations...it has helped take away some of the stress emotionally and financially while trying to deal with everything else. Thank you again!
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Almost half way to our goal! Thank you to everyone for your donations :)
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Read a Previous Update
Erin Pagel
53 months ago

An individual very close to me was diagnosed with an extremely rare cancer by a team of doctors at University Hospital in Cleveland, Ohio. It took them awhile to figure it out, but the treatment received is the best. Praying for healing.

+ Read More
Lyndsay Clegg
53 months ago

I want you to check with a dermatologist about Photodermatitis. It is rare. I was in the hospital with a mistaken diagnosis of flesh eating bacteria. Turns out I spilled lime juice on myself from a summer drink, and the sun reacted with the lime creating what looked like a burn rash. Mine made 2nd degree blisters. This was Phytophotodermatitis. However, Photodermatitis can be caused by a sun/ UV allergy. It causes scars....I still have mine. That rash and swelling looks like it. I was working with an infectious disease doctor. He had never seen it and was convinced it was bacterial. It took a random doctor walking into my room to see the "girl with the blisters all over her leg." to figure it out. He happened to see it in a text book his wife was reading.

+ Read More
Becky Garner
53 months ago

This is something totally different from the other posts. It looks like what a friend of mine suffered from for years, and she had been to tons of doctors including Mayo Clinic 3 times, Duke and Johns Hopkins. Finally an allergist tested her for candida, and it popped up immediately. It's an easy skin test. Candida is a build-up of bad bacteria in the digestive system and has symptoms like Maddie. She needs to get off antibiotics, if she is on any, which ill off the good bacteria and start with things like kefir that has many good probiotics.

+ Read More
Katrina Rose-Lewis
53 months ago

link w/ other conditions w/ symptoms you gave you might want to explore http://www.freemd.com/s2/0051/body-rash-nose-bleed.htm

+ Read More
Katrina Rose-Lewis
53 months ago

Her rash kind of looks like that of little girls in link shared here who has idiopathic thrombocytopenic purpura symptoms include rash as well as nosebleeds etc. http://aapredbook.aappublications.org/content/1/SEC131/SEC241/F1547.large.jpg

+ Read More
Darlene Jamerson
53 months ago

Definitely an allergic response. Good suggestions in the other comments. There's an all natural product called Protandim that heals the body from the cellular level and they have a skin care product as well that has amazing results for many skin conditions. They have a website. Worth a try if you keep searching with no answers. Praying for a healing soon!

+ Read More
Megan Patterson
53 months ago

If your daught er has used topical steroid creams she may be going through Topical Steroid Withdrawal. I had all the same symptoms. Have a read of my blog here at http://withdrawalofsteroidcreams.blogspot.com.au and I have set up a Facebook support page where you may get answers there too. https://www.facebook.com/groups/212642132257327/ I do hope you read this. It was a very frustrating journey to find out what was wrong with me too. Please contact me if you need too . Regards Megan xo

+ Read More
Loren McCormac
53 months ago

Have you heard of topical. Steroid addiction withdrawal...aka red skin syndrome. I don't know of Maddir has been on steroids or not but it looks like what my son is suffering from red skin syndrome. Google itsan.org and see what you think. Poor girl! I hope her suffering end soon! Xoxoxo klines mom , Loren http://klinestopicalsteroidhell.blogspot.com/?m=1

+ Read More
Johanna Seabolt
53 months ago

This looks and sounds like Red Skin Syndrome. Go to itsan.org. There is a 100% cure rate, but it is a long tough road. There's a support group on itsan and hundreds of people recovering.

+ Read More
Susan Alexander
53 months ago

Please take a look at itsan.organization - it may not be that, but consider topical steroid addiction. ♡

+ Read More
Audrey Cullen
53 months ago

Please take a look at ITSAN.org. You may be dealing with Topical Steroid Addiction. There is a Facebook page called Eczema & Topical Steroid Withdrawal/Red Skin Syndrome. It looks similar to many postings there.

+ Read More
Crystal Walk
53 months ago

II pray you will find answers soon and all will be well. I also had a strange rash on my face. My eyelids would crack and bleed. 5 doctors had no idea. It turned out to be allergy triggered excema. I control it now with Zyrtec. Such an easy solution after years of suffering...I will always be grateful for those who shared their experiences on the internet. Otherwise I would probably still be going from doctor to doctor with no relief. Best wishes!

+ Read More
Cappy Arnold
53 months ago

I copied the following from another comment I saw. I'm posting in hopes that it will help. "I wish I knew what it's called, They need to check her Red and White Cell count. My granddaughter has this and it took them up till last year to figure it out in Portland, OR. It's has something to do with the Red Cells eat up her White Cells or the other way around, but she looked like this from the time she was 3 months old. "

+ Read More
undefined undefined
53 months ago

Linnette is in Melbourne, FL, where they have 17 pulsed microwave radars in addition to all of the cell towers. She lectures in the dangers of electromagnetic/microwave radiation Linnette M. Beck AP, DOM, Dipl. Ac. (NCCAOM) Beck Natural Medicine LLC 497 N. Harbor City Blvd Melbourne, FL 32935 tel: 321-259-9090 fax: 321-259-9089 www.BeckNaturalMedicine.com

+ Read More
undefined undefined
53 months ago

She may be sensitive to RF/electromagnetic radiation. Get a microwave meter that measures 0-8 GHz radiation. New Kent County has a VERY powerful microwave radar installation: Radar/Call Sign ROTHR – Virginia Model AN/TPS-71 ROTHR Max Pulsed Power (Watts) 1,000,000 Gain (dBi) 100.0 Maximum ERP 100,000,000 Frequency (MHz) 30 Latitude 37.56543 Longitude -77.02465 FIPS 51127 County New Kent State VA Comments/Source http://fas.org/nuke/guide/usa/airdef/an-tps-71.htm. If EMR is the problem you need to move her to a country area without a lot of radars(weather, FAA and military) and minimize wifi/cell tower radiation near her. Research @ darkmattersalot

+ Read More
Miranda Epperson
54 months ago

Tri-Life Health in Fort Collins, CO might be a resource. I know you have probably heard this before, but have you ruled out Lyme Disease or Celiac Disease/other food allergies or intolerances? I have had experience with both, with VERY atypical symptoms. Oh, I'm praying you find help for your little girl, and that it will come soon. Sending caring thoughts...

+ Read More
Sara Carroll
54 months ago

There is an amazing allergist/immunologist in Charlottesville at UVA Medical Center... Dr. Platts-Mill... he is amazing! I think he might be able to help.

+ Read More
Marie Cottingham
54 months ago

It seems like you have been to a lot of doctors has she been on antibiotic steroid my friends son had a rash looking like this they said it was extreme exzema that could bleed it was so bad. The baby also had swollen lymph nodes. I would also be concerned it is allergy related. This might all sound stupid as I do not know your full story' . I pray there is a cure soon for your baby.

+ Read More

$4,185 of $10,000 goal

Raised by 78 people in 56 months
Created June 22, 2014
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$250
Anonymous
26 months ago
1
1
KW
$20
Kirsten Wilson
26 months ago
1
1

Praying things turn around for you guys and more blessings come your way!

$50
Traci Pollard
26 months ago
1
1

Prayers for your sweet girl.

$25
Anonymous
49 months ago
$500
Anonymous
50 months ago
$500
Anonymous
50 months ago
$15
Anonymous
50 months ago
Erin Pagel
53 months ago

An individual very close to me was diagnosed with an extremely rare cancer by a team of doctors at University Hospital in Cleveland, Ohio. It took them awhile to figure it out, but the treatment received is the best. Praying for healing.

+ Read More
Lyndsay Clegg
53 months ago

I want you to check with a dermatologist about Photodermatitis. It is rare. I was in the hospital with a mistaken diagnosis of flesh eating bacteria. Turns out I spilled lime juice on myself from a summer drink, and the sun reacted with the lime creating what looked like a burn rash. Mine made 2nd degree blisters. This was Phytophotodermatitis. However, Photodermatitis can be caused by a sun/ UV allergy. It causes scars....I still have mine. That rash and swelling looks like it. I was working with an infectious disease doctor. He had never seen it and was convinced it was bacterial. It took a random doctor walking into my room to see the "girl with the blisters all over her leg." to figure it out. He happened to see it in a text book his wife was reading.

+ Read More
Becky Garner
53 months ago

This is something totally different from the other posts. It looks like what a friend of mine suffered from for years, and she had been to tons of doctors including Mayo Clinic 3 times, Duke and Johns Hopkins. Finally an allergist tested her for candida, and it popped up immediately. It's an easy skin test. Candida is a build-up of bad bacteria in the digestive system and has symptoms like Maddie. She needs to get off antibiotics, if she is on any, which ill off the good bacteria and start with things like kefir that has many good probiotics.

+ Read More
Katrina Rose-Lewis
53 months ago

link w/ other conditions w/ symptoms you gave you might want to explore http://www.freemd.com/s2/0051/body-rash-nose-bleed.htm

+ Read More
Katrina Rose-Lewis
53 months ago

Her rash kind of looks like that of little girls in link shared here who has idiopathic thrombocytopenic purpura symptoms include rash as well as nosebleeds etc. http://aapredbook.aappublications.org/content/1/SEC131/SEC241/F1547.large.jpg

+ Read More
Darlene Jamerson
53 months ago

Definitely an allergic response. Good suggestions in the other comments. There's an all natural product called Protandim that heals the body from the cellular level and they have a skin care product as well that has amazing results for many skin conditions. They have a website. Worth a try if you keep searching with no answers. Praying for a healing soon!

+ Read More
Megan Patterson
53 months ago

If your daught er has used topical steroid creams she may be going through Topical Steroid Withdrawal. I had all the same symptoms. Have a read of my blog here at http://withdrawalofsteroidcreams.blogspot.com.au and I have set up a Facebook support page where you may get answers there too. https://www.facebook.com/groups/212642132257327/ I do hope you read this. It was a very frustrating journey to find out what was wrong with me too. Please contact me if you need too . Regards Megan xo

+ Read More
Loren McCormac
53 months ago

Have you heard of topical. Steroid addiction withdrawal...aka red skin syndrome. I don't know of Maddir has been on steroids or not but it looks like what my son is suffering from red skin syndrome. Google itsan.org and see what you think. Poor girl! I hope her suffering end soon! Xoxoxo klines mom , Loren http://klinestopicalsteroidhell.blogspot.com/?m=1

+ Read More
Johanna Seabolt
53 months ago

This looks and sounds like Red Skin Syndrome. Go to itsan.org. There is a 100% cure rate, but it is a long tough road. There's a support group on itsan and hundreds of people recovering.

+ Read More
Susan Alexander
53 months ago

Please take a look at itsan.organization - it may not be that, but consider topical steroid addiction. ♡

+ Read More
Audrey Cullen
53 months ago

Please take a look at ITSAN.org. You may be dealing with Topical Steroid Addiction. There is a Facebook page called Eczema & Topical Steroid Withdrawal/Red Skin Syndrome. It looks similar to many postings there.

+ Read More
Crystal Walk
53 months ago

II pray you will find answers soon and all will be well. I also had a strange rash on my face. My eyelids would crack and bleed. 5 doctors had no idea. It turned out to be allergy triggered excema. I control it now with Zyrtec. Such an easy solution after years of suffering...I will always be grateful for those who shared their experiences on the internet. Otherwise I would probably still be going from doctor to doctor with no relief. Best wishes!

+ Read More
Cappy Arnold
53 months ago

I copied the following from another comment I saw. I'm posting in hopes that it will help. "I wish I knew what it's called, They need to check her Red and White Cell count. My granddaughter has this and it took them up till last year to figure it out in Portland, OR. It's has something to do with the Red Cells eat up her White Cells or the other way around, but she looked like this from the time she was 3 months old. "

+ Read More
undefined undefined
53 months ago

Linnette is in Melbourne, FL, where they have 17 pulsed microwave radars in addition to all of the cell towers. She lectures in the dangers of electromagnetic/microwave radiation Linnette M. Beck AP, DOM, Dipl. Ac. (NCCAOM) Beck Natural Medicine LLC 497 N. Harbor City Blvd Melbourne, FL 32935 tel: 321-259-9090 fax: 321-259-9089 www.BeckNaturalMedicine.com

+ Read More
undefined undefined
53 months ago

She may be sensitive to RF/electromagnetic radiation. Get a microwave meter that measures 0-8 GHz radiation. New Kent County has a VERY powerful microwave radar installation: Radar/Call Sign ROTHR – Virginia Model AN/TPS-71 ROTHR Max Pulsed Power (Watts) 1,000,000 Gain (dBi) 100.0 Maximum ERP 100,000,000 Frequency (MHz) 30 Latitude 37.56543 Longitude -77.02465 FIPS 51127 County New Kent State VA Comments/Source http://fas.org/nuke/guide/usa/airdef/an-tps-71.htm. If EMR is the problem you need to move her to a country area without a lot of radars(weather, FAA and military) and minimize wifi/cell tower radiation near her. Research @ darkmattersalot

+ Read More
Miranda Epperson
54 months ago

Tri-Life Health in Fort Collins, CO might be a resource. I know you have probably heard this before, but have you ruled out Lyme Disease or Celiac Disease/other food allergies or intolerances? I have had experience with both, with VERY atypical symptoms. Oh, I'm praying you find help for your little girl, and that it will come soon. Sending caring thoughts...

+ Read More
Sara Carroll
54 months ago

There is an amazing allergist/immunologist in Charlottesville at UVA Medical Center... Dr. Platts-Mill... he is amazing! I think he might be able to help.

+ Read More
Marie Cottingham
54 months ago

It seems like you have been to a lot of doctors has she been on antibiotic steroid my friends son had a rash looking like this they said it was extreme exzema that could bleed it was so bad. The baby also had swollen lymph nodes. I would also be concerned it is allergy related. This might all sound stupid as I do not know your full story' . I pray there is a cure soon for your baby.

+ Read More
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