Wisconsin teen diagnosed with cancer while battling rare ‘butterfly skin’ disease: ‘He is resilient’ – Fox News
By daniellenierenberg
At just 13 years old,Charlie Knuth, of Darboy, Wisc., has known more pain than most others do in a lifetime. The teen, who suffers from epidermolysis bullosa, a rare disease that causes his skin to blister incredibly easily, is near-constantly wrapped in bandages to protect his fragile skin. He takes special baths to soothe his sores, which can form from the slightest touch and are lanced before he is covered in fresh dressings.But the so-called butterfly child a name often given to EB sufferers as their skins fragility is similar to that of a butterfly wing has another battle ahead: cancer.
Its unimaginable, Trisha Knuth, Charlies mother, told Fox News. Even as his mom, when I see him taking it in stride, I cant even believe that he can.
BOY, 2, HAS RARE 'SCALE'-LIKE SKIN CONDITION THAT AFFECTS 1 IN 500,000: 'HES OVERCOME SO MUCH'
Charlies biological parents abandoned him at the hospital shortly after his birth. Knuth and her husband, Kevin, had long fostered children with complex medical needs. But just weeks before they received a call about Charlie, they were readying to let their license expire; the tragic cases were simply becoming too much. Even so, Knuth said shecouldnt say no to Charlie she knew to do so was likely a death sentence. They began the lengthy adoption process shortly after bringing him home.
Trisha Knuth and Charlie, 13. (Trisha Knuth/Facebook)
When I went to the children's hospital in Milwaukee, he was slathered from head-to-toe in Vaseline," she recalled."Nobody ever came for him. I worked with the nurses and learned his care but EB is so rare that many hospitals don't know how to care for those with [the condition]. They sent me home with morphine and a few things and it was a learning process from there.
Thirteen years later, Charlie didnt end up dying, he ended up thriving, she said. When he was 5 years old, he underwent an experimental skin grafting procedure at the University of Minnesota in an attempt to make his skin stronger and less prone to blistering. Knuth called it a transformation for her young son, who had two really good years before his body rejected the graft and he began to suffer from aplastic anemia, a potentially deadly condition that occurs when the body doesn't produce enough red blood cells.
In 2012, he underwent a stem cell transplant in an attempt to treat his severe EB. He was hospitalized for six months but eventually pulled through.
Charlie, who suffers from EB, was recently diagnosed with cancer. (Trisha Knuth/Facebook)
Hes done pretty well after that second time. But he is constantly wounded, very fragile, said Knuth.
But in recent months, Charlie began to complain of a sore throat not uncommon for those with EB, as blisters can form on the inside of the body as well on the outside. The mouth and throat are commonly affected.But there were no visible blisters, raising his doctor's suspicions. ACT scan later revealed enlarged lymph nodes in his neck and armpits. A biopsy later confirmed lymphoma, a type of cancer that affects the bodys lymphatic system. Knuth called the diagnosis another hurdle in his very hard life.
The pain was masked by EB. Its hard to tell whats what because EB causes so much pain, she said.
Cancer treatment often consisting of chemotherapy, radiation, and surgery is hard enough on an average persons body. But those with EB face an entirely different battle; Knuth said nurses inserting an IV cant use medical tape to help attach the drip, as the adhesive ripsher sons skin when removed. Oxygen and anesthesia masks are often a struggle as well, as are blood pressure cuffs.
Charlie (R) when he was younger. (Trisha Knuth/Facebook)
How do you treat someone who cant be touched? Knuth questioned, noting she has gone into the operating room with Charlie in times past to ensure he is not injured. You cant even imagine. [Its like] being burned every day, and then bandaged, and nowundergoing cancer treatment it boggles the mind.
When speaking to Fox News, Knuth and Charlie were in Minnesota, where doctors are working to build atreatment plan. The day after Christmas which the pair are celebrating in an Airbnb Charlie is slated to undergo a procedure to remove fluid from his spine and bone marrow from his hips. One of his affected lymph nodes will be taken for further testing.
In the meantime, Kevin is home with the couples 2-year-old adopted daughter, who also suffers from EB.
"He puts on a great outward attitude, but I know there is trauma."
CLICK HERE TO GET THE FOX NEWS APP
He is very brave and resilient and funny, said Knuth of Charlie. But in addition to the physical pain, He does have emotional pain; he puts on a great outward attitude, but I know there is trauma.
When asked how she and Kevin manage it all, Knuth acknowledged theirs is a crazy life. But, she quickly noted, I am very happy with this life. Its hard. But when I die, I'll know my life was fulfilled and great.
See more here:
Wisconsin teen diagnosed with cancer while battling rare 'butterfly skin' disease: 'He is resilient' - Fox News
- New skin research could help slow signs of ageing - BBC.com - October 21st, 2024
- Human skin map gives 'recipe' to build skin and could help prevent scarring - Medical Xpress - October 21st, 2024
- A new cell therapy company takes its vision from four founders, and its skin from George Church - STAT - September 23rd, 2024
- Women 60+ love this hydrating stem cell-infused moisturizer that's $15 right now - Yahoo Life - September 23rd, 2024
- NKGen Biotech Publishes Phase 1 Interim Analysis Results of SNK02 Allogeneic NK Cell Therapy in Advanced Solid Tumors at the 2024 American Society of... - May 25th, 2024
- FibroGen Announces Presentation of Positive Interim Data from the Phase 1b Study of FG-3246 (FOR46) in Combination with Enzalutamide in Patients with... - May 25th, 2024
- Cogent Biosciences Appoints Cole Pinnow as Chief Commercial Officer - May 25th, 2024
- G1 Therapeutics Announces Upcoming Presentation at the 2024 American Society of Clinical Oncology (ASCO) Meeting - May 25th, 2024
- Updated Phase 1 Clinical Data for SYS-6002 (CRB-701) to be presented at 2024 ASCO Annual Meeting - May 25th, 2024
- Affimed Announces Positive Early Efficacy and Progression Free Survival Results of AFM24-102 Study in EGFR Wild-Type Non-Small Cell Lung Cancer at the... - May 25th, 2024
- SpringWorks Therapeutics Announces Data to be Presented at the 2024 American Society of Clinical Oncology (ASCO) Annual Meeting - May 25th, 2024
- Sensei Biotherapeutics Presents Promising Clinical Data from Phase 1 Dose Escalation Study of SNS-101 - May 25th, 2024
- Elicio Therapeutics Announces Preliminary Data from the Ongoing AMPLIFY-7P Phase 1a Study of ELI-002 7P in Patients with mKRAS-driven Solid Tumors at... - May 25th, 2024
- Kronos Bio to Present Clinical Update on Phase 1/2 Trial of KB-0742 at the 2024 American Society of Clinical Oncology (ASCO) Annual Meeting - May 25th, 2024
- Coherus Presents Preliminary Results from Phase I Dose Escalation Study of its Anti-chemokine receptor 8 (CCR8) Antibody, CHS-114, at the 2024... - May 25th, 2024
- 3Daughters to Participate in Women’s Health Panel During the 2024 BIO International Convention in San Diego, CA, June 3-6 - May 25th, 2024
- HUTCHMED Highlights Presentations at the 2024 ASCO Annual Meeting - May 25th, 2024
- Myriad Genetics Showcases New Research and Product Innovations Advancing Cancer Care at 2024 ASCO® Annual Meeting - May 25th, 2024
- Lift BioSciences Announces Abstract Publications at the American Society of Clinical Oncology (ASCO) Annual Meeting - May 25th, 2024
- Nicox: 2024 Ordinary Shareholder Meeting to be held on June 28th, 2024 - May 25th, 2024
- Adlai Nortye Ltd. to Present Encouraging Data of the Combination of AN0025 and Definitive Chemoradiotherapy (dCRT) at ASCO 2024 - May 25th, 2024
- Vitamin A could have a key role in both stem cell biology and wound healing: Study - Medical Dialogues - March 10th, 2024
- Cyclerion Strengthens Board of Directors with Experienced Company Builder and Cutting-edge Innovator - December 4th, 2023
- Aptose Appoints Fletcher Payne Chief Business Officer, Expanding his Executive Role - December 4th, 2023
- Opthea to Present at the FLORetina 2023 Congress - December 4th, 2023
- HUTCHMED Highlights Clinical Data to be Presented at 2023 ESMO Asia and ESMO Immuno-Oncology Congresses - December 4th, 2023
- AC Immune Strengthens Management, Appoints Madiha Derouazi as CSO and Christopher Roberts as CFO - December 4th, 2023
- Publication of a transparency notification received from Tolefi SA (Article 14 §1 of the Law of 2 May 2007) - December 4th, 2023
- Annovis Bio Appoints Andrew Walsh as Vice President Finance - December 4th, 2023
- Foghorn Therapeutics Announces Clinical Data from Phase 1 Study of FHD-286, a Novel BRG1/BRM Inhibitor, in Patients with Advanced Hematologic... - December 4th, 2023
- Akari Therapeutics Appoints Experienced Life Sciences Entrepreneur Samir R. Patel, M.D. to Board of Directors - December 4th, 2023
- Ovid Therapeutics to Present Five Abstracts Supporting its Epilepsy Programs at the 77th American Epilepsy Society Annual Meeting (2023) - December 4th, 2023
- Spectral Medical Announces CFO Departure - December 4th, 2023
- Are STEM CELL EXOSOMES the secret to a 'snatched' jawline? Discover the products that influencers are claiming - Daily Mail - November 18th, 2023
- Defence Mechanisms: Four ways your body is protecting you every time you fall sick - indulgexpress - May 16th, 2023
- Treat Yourself to a Spa Day With a $100 Deal on $600 Worth of Products From Elemis, 111SKIN, Nest & More - E! NEWS - May 16th, 2023
- INTERNATIONAL STEM CELL CORP MANAGEMENT'S DISCUSSION AND ANALYSIS OF FINANCIAL CONDITION AND RESULTS OF OPERATIONS (form 10-K) - Marketscreener.com - April 5th, 2023
- Skin Regeneration: The Science and How to Boost It - Healthline - March 9th, 2023
- Treat Yourself to a Spa Day With a $100 Deal on $600 Worth of Products From Elemis, U Beauty, Nest & More - E! NEWS - March 1st, 2023
- 7-year-old vows to find a cure for brother in need of bone marrow transplant - WJLA - February 21st, 2023
- World's most radioactive man 'cried blood' as his skin melted in 83-day nightmare - Times Now - February 4th, 2023
- How old are you, really? The answer is written on your face. - National Geographic UK - February 4th, 2023
- Skin: Layers, Structure and Function - Cleveland Clinic - January 27th, 2023
- Human skin | Definition, Layers, Types, & Facts | Britannica - January 27th, 2023
- Skin Disorders: Pictures, Causes, Symptoms, and Treatment - Healthline - January 27th, 2023
- Skin care: 5 tips for healthy skin - Mayo Clinic - January 27th, 2023
- Skin Care and Aging | National Institute on Aging - January 27th, 2023
- Wrinkles - Symptoms and causes - Mayo Clinic - January 27th, 2023
- Dry skin - Symptoms and causes - Mayo Clinic - January 27th, 2023
- Stem cells: a brief history and outlook - Science in the News - January 3rd, 2023
- Still Drinking Green Tea? Doctor Reveals A Healthier Drink With Proven Benefits For Diabetes, Aging, Oxidative Stress, And Cancer - Revyuh - January 3rd, 2023
- RUDN Physician And Russian Scientists Investigate Long-term Effects Of Treating Diabetic Ulcers With Stem Cells - India Education Diary - December 25th, 2022
- The Use of Stem Cells in Burn Wound Healing: A Review - Hindawi - December 1st, 2022
- FACTORFIVE Skincare The Power of Stem Cells for Skin - December 1st, 2022
- Embryonic Stem Cells - The Definitive Guide | Biology Dictionary - December 1st, 2022
- From pro soccer hopeful to hip hop artist with illness and addiction along the way, Tymaz Bagbani releases debut album - Toronto Star - December 1st, 2022
- Stem Cells | The ALS Association - November 22nd, 2022
- What is a stem cell? YourGenome - October 29th, 2022
- Skin Cell - The Definitive Guide | Biology Dictionary - October 29th, 2022
- Explora Journeys Plans Extensive Fitness And Well-Being Initiatives At Sea, Right On Trend - Forbes - October 29th, 2022
- Ahead of the holiday shopping season, Amazon kicks off second annual Holiday Beauty Haul on Oct. 24 - KXAN.com - October 21st, 2022
- Human skin color - Wikipedia - October 13th, 2022
- Mesenchymal Stem Cells | Properties, Process, Functions, & Therapies - October 13th, 2022
- Skin Grafting, Cryopreservation, and Diseases: A Review Article - Cureus - October 13th, 2022
- Anti-ageing cosmetics: Can they turn back the hands of the clock? - The Sunday Guardian Live - The Sunday Guardian - October 13th, 2022
- Brennand named Elizabeth Mears and House Jameson Professor of Psychiatry - Yale News - October 13th, 2022
- The Switch to Regenerative Medicine - Dermatology Times - October 13th, 2022
- Last Chance to Get The Collagen-Infused Massage Oil That Moisturizes Skin & Diminishes Cellulite For Less Than $20 - msnNOW - October 13th, 2022
- Addison's Disease Explained: Causes, Symptoms, And Treatments - Health Digest - October 13th, 2022
- Stem Cells Therapy for Autism: Does it Work? - October 5th, 2022
- Stem-like CD8 T cells mediate response of adoptive cell ... - PubMed - October 5th, 2022
- 6 Under Eye Products You Need To Have STAT - Grazia India - October 5th, 2022
- CellResearch Corporation (CRC) to present promising new stem cell products for the treatment of chronic diabetic foot ulcers at the world's premier... - September 27th, 2022
- Reprogramming pig cells leads way for new regenerative therapies - National Hog Farmer - September 27th, 2022
- A glimpse into Indian consumers expectations for cosmetic treatments and consumption insights - The Financial Express - September 27th, 2022
- Tajmeel redefines beauty to give its patients the best results - Gulf News - September 27th, 2022
- Here Is Why You Heal Slower As You Age - Health Digest - September 27th, 2022
- Creating stem cells from minipigs offers promise for improved treatments - University of Wisconsin-Madison - September 19th, 2022
- Israeli Biotech Firm Plans to Create Human Embryos to Harvest Organs, Field Experts Say There are Ethical Concerns - CBN.com - September 19th, 2022
- CellResearch Corporation (CRC) announces positive results of Phase I study for CorLiCyte - PR Newswire - September 19th, 2022