Madisyn's rare painful skin disease

$6,275 of $25,000 goal

Raised by 109 people in 43 months
April Sestito
on behalf of Mary Yuhas
 CLAIRTON, PA
Madisyn is a 17 year old beautiful girl who was born with a rare skin condition called, "Epidermolysis Bullosa" or EB. There is no cure and everyday is a struggle for her. Her Mom is her "rock" and always there for her. She has Home Care Nurses who care for her as well. She eats very little and requires nightly liquid feedings through a tube that goes into her stomach. She has painful blisters and skin tears all over her body and blisters internally as well. Most people enjoy a nice hot bath, but for Madisyn , that is not the case. Her bath takes about 3 hours. First, all bandages must come off slowly and require adhesive remover because they stick to her skin, she then soaks in a bathtub with clorox bleach added to the water to minimize infection, then, all wounds are cared for with medicated ointments and various bandage materials. She is on daily heavy duty pain medication, frequent antibiotics and numerous other medications. Madisyn is often nautious, tired and in constant pain! She spends a lot of time at numerous Dr. appointments which are over an hour drive and are exhausting for her. She can walk short distances, but uses a wheelchair for longer distances. She is an inspiration to many because with everything she goes through, she has a loving, caring, upbeat spirit! We are raising money so that Madisyn and her family can attend a beneficial conference about her rare condition in which many physicians, wound care specialists, researchers, etc. will be presenting. The conference is out of state and costly to attend. We are also raising money to help with expenses that are not covered by insurance, but are needed to care for Madisyn. Thank you for taking the time to read this and for any contribution you make to help Madisyn!
www.debra.org
8237099_1452782426.1412_funddescription.
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So proud of Madisyn Yuhas! She just graduated from Elizabeth Forward Highschool last night! She goes through so much on a daily basis and it was her night to shine! She was admitted to Childrens Hospital last week for an infection and we were fortunate that she was able to attend commencement! Go Maddie girl!!
Madisyn's graduation!!
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So proud of Madisyn Yuhas! She just graduated last night from Elizabeth Forward HighSchool! She goes through so much on a daily basis and last night was her night to shine! She was admitted to Childrens Hospital last week for an infection and very thankful she was able to attend commencement! Way to go Maddie Girl!!!! We all love you!!
Congratulations Madisyn Yuhas 2017 Graduate!!!
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Madisyn is in the operating room at Cincinnati Childrens Hospital for right hand contracture release/ halo matrix surgery! She was scared and crying when they escorted her to the operating room! She has been through so much! Please keep her in your thoughts and prayers!
Cincinati Childrens Hospital
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Madisyn, her Mom, Grandma and myself attended the Debra Care Conference ( regarding Madisyn's rare skin disorder) in Texas last month where we attended many beneficial lectures and also met many new EB families! Madisyn used her electric wheelchair at the resort and was able to have some independence and socialize with other EB kids! It was a great experience for all of us! Thank you to everyone who donated and helped Madisyn attend the conference! Madisyn is currently at Childrens Hospital of Cincinnati for a couple of days being evaluated by numerous physicians at the EB (Epidermolysis Bullosa) clinic. Some of the team to evaluate her includes:
1) Dermatology
2) Pain Management
3) Gastroenterology
4) Anesthesiologist
5) Nutritionist
6) Psychology
7) Physical Therapy

Tomorrow, she will have her first whirlpool bath at the hospital. She will be sedated by an Anesthesiologist and a therapist will debried her wounds. Once completed, her mom and I will re-bandage all her wounds! This evening, she will receive adequate fluids through her feeding tube to assure she is hydrated efficiently which will make it easier for Intravenous therapy administration. Madisyn usually takes a long time to come out of anesthesia and depending on her level of pain, she may need to stay in the hospital for pain control. If she is feeling ok afterward and doesn't have to stay, then we will be on our way back home to Pittsburgh! Madisyn has ongoing expenses not covered by insurance and your donations are much appreciated! Thank you for helping Madisyn obtain a higher quality of life!
Madisyn at Children's Hospital of Cincinnati
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Read a Previous Update
Laura Mae Mae
18 months ago

Hi there....any updates on Maddie? I would like to share this page but want to make sure it's still applicable

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Margaret Howard
42 months ago

Hello, we have mutual friends. I also have another friend with a daughter who has EB... Please visit her website as they are very active in fundraising for research and will be attending the upcoming conference out west. Butterflywishesforellie.com Prayers for you all ~M

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$6,275 of $25,000 goal

Raised by 109 people in 43 months
Created January 14, 2016
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KD
$30
Kimberly Dragosin
26 months ago
$50
Sharon Zubasic Briggs
28 months ago

Prayers sent your way

$10
Britany Lee
28 months ago
RF
$25
Renee Fontaine
28 months ago
DV
$100
Debbie Vehec
28 months ago
DO
$100
David Orlando
29 months ago
$10
Dave Miller
30 months ago
HP
$50
Hailey Parker
30 months ago
$100
Anonymous
30 months ago
Laura Mae Mae
18 months ago

Hi there....any updates on Maddie? I would like to share this page but want to make sure it's still applicable

+ Read More
Margaret Howard
42 months ago

Hello, we have mutual friends. I also have another friend with a daughter who has EB... Please visit her website as they are very active in fundraising for research and will be attending the upcoming conference out west. Butterflywishesforellie.com Prayers for you all ~M

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