John Hudson SuperBowl Polar Bear Plunge
Organized by: Catherine Rode
EVENT DATE Feb 07, 2016
It’s almost February and you know what that means? SuperBowl Sunday and time to go for a dip in the ocean. Once again, Gene Meyer from Akamai is supporting a very special young boy who suffers from a rare, genetic skin disease called Epidermolysis Bullosa, otherwise known as EB. Your generous donations go directly to him, his family and to research for a cure.
Included below is an update about John Hudson, some new videos and some information for those who are unfamiliar with the most horrible disease on the planet.
https://www.youtube.com/watch?v=FlpDF67eWDM John Hudson and Dash his new service Dog, Dash
From his Mom
We are so grateful for your support for John Hudson....The donations we received last year were such a blessing and made a tremendous difference in the quality of life for John Hudson. I cannot tell you how thankful we are and wanted to let you know about some of ways your generous contributions have helped JH:
- Purchased a sleep number bed which allows for elevation of the feet/head and has NASA technology to prevent overheating. JH loves it!!
- Made 4 trips to Cincinnati Children’s Hospital for sedated whirlpools and to see his team of Specialists who help alleviate his pain.
- Offset the costs of John's many medications, cleansers, eye drops, compounded medications, etc.
- Fitted our house with solar panels so we can defray our exorbitant Con Ed bill!. JH must be in air conditioning 9 months of the year to keep him cool and not overheated.
- And most the most wonderful gift happened when JH received his Mobility Assistance Dog named Dash. Your donations allowed us to travel to Texas to have 3 days of training with him! Dash has made a tremendous improvement to John's life and is a VERY smart and talented dog. The love and loyalty between Dash and JH is so strong and touching....he has lifted John's spirits in ways I didn't think possible.
In closing, every day and week continues to be a challenge, every day is a struggle....but we are so blessed to be surrounded by people who care and continue to reach out to us and get us through. Your contributions and prayers make his days a little easier and allow us to help him without the additional worry of a financial burden. Clearly, your light and love helped get him back to school after being home the last 2 years, something we never thought would happen again!
Thank You Gene for your incredible support and for taking on this exciting challenge for John Hudson. Hopefully he will be feeling better and the family can support you in person on Superbowl Sunday!
With many, many thanks for your support,
The Dilgen Family
What is EB?
Most of the time, kids need only a band aid and a kiss from Mom to make a boo-boo feel better. But for our friend, 13-year-old John Hudson Dilgen, it's not that simple. EB disables the body’s ability to anchor skin cells properly. As a result, John Hudson and other children with this disease are extremely susceptible to wounds, blisters and infections - both internally and externally - and require constant medical supervision and skilled care. The blisters and wounds caused by EB form not only on the outer skin, but also in the esophagus, stomach and other internal organs. John Hudson has to be bandaged anew from head to toe each day, undergoing several hours-long wound care procedures that are both painful for him to endure and emotionally exhausting for his parents and caregivers to render. There is no cure for EB, only daily bandage changes and pain medication. Children who survive John Hudson's severe form of EB in infancy face years of intractable pain and chronic infections. Most often, these children succumb to squamous cell carcinoma and failure to thrive.
https://www.youtube.com/watch?v=fv8I2ukZ82k John Hudson and Dash
https://www.youtube.com/watch?v=QSJvD6msRoo Eddie Vedder joins the cause
https://www.youtube.com/watch?v=oM5Am04eIIE The Boy With Butterfly Skin Video made by his cousin
https://www.youtube.com/watch?v=xY6nCKmrquU The Doctors TV Show