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By Michelle Janzen
Holly and Jason, owners of Dufferin Firewood Shop are raising money for Madden by raffling off one of their unique fire pit rings.
Madden was born full term on November 9, 2016 and weighed 7lbs 3oz at Credit Valley Hospital, Mississauga. He did not show many signs of life including no crying, no eye opening, no reactions and was unable to eat.
After the hospital exhausted all resources, he was sent to Sick Kids Hospital in Toronto at just six days old. Madden has received a spinal tap, an MRI, multiple EEGs, lots of blood work, urine workups and more tests, and eventually the metabolics team came to agree Madden had the terminal genetic disorder NKH.
Although Madden was only given two weeks to live, he continues to defy the odds.
Dufferin Firewood Shop is a family owned and operated business that provides firewood and related fire side products. Owner Holly tells the Free Press “We came to know about Madden and his troubles as I followed Jamie-Lee and her business Prim Pickins' for some time as she was somewhat of an inspiration to me with all of her accomplishments. Over time she has made some of her signs for us and we have sold to her as well. By following her on Facebook I heard about her nephew Madden and all of his health issues and just had to help.
“I have children who are currently healthy and happy and when you see families who've been touched by critical illness or physical disability you can't help but empathize with them and want to help," says Jason of Dufferin Firewood Shop. “Every penny that we raise will go directly to the family.”
Since being diagnosed with NKH, Madden has since started having seizure clusters (spasms). With many trips back and forth to the local hospital as well as Sick Kids, medications are continuously being altered to help keep his conditions under control.
Madden received a G tube and was put on a ketogenic diet, and was showing positive signs in his growth recently when there was once again another setback. A mass was found wrapped around his spermatic cord in his abdomen and it is squeezing his nerves and vessels causing swelling and pain in his testicles. Although pathology came back saying it is not cancer, they are still not sure what it is.
Madden's mother Lisa and Aunt Jamie-Lee say “We thank you all for following Maddens journey with this life limiting terrible illness. We appreciate all of your kind words and messages, not to mention donations. They have helped pay for things like non-covered medications, supplies, baby essentials, parking and fuel.”
Currently Madden remains at Sick Kids in Toronto with mom Lisa and aunt Jamie-Lee staying by his side with the help of Ronald McDonald house.
To help raise funds for Madden and possibly win a beautiful diamond fire pit that is the ideal piece to enjoy an outdoor fire, surrounded with friends and family at home in the backyard, cottage or campsite please call 905-703-4011, email firstname.lastname@example.org, or send them a Facebook message.
You can also help Madden on his Go Fund Me page which can be found at www.gofundme.com/maddens-journey-with-nkh.
Post date: 2017-05-01 00:39:35
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