The following email was sent to officials at the Cystic Fibrosis Foundation (CFF.org) regarding the Kenlee DCF case.
Cystic Fibrosis Foundation
4550 Montgomery Ave., Suite 1100 N
Bethesda, MD 20814
United States
CFF Board & Corporate Officers
- KC Bryan White – Board Chair
- Michael P. Boyle, MD – President & Chief Executive Officer
- Irena Barisic – Executive Vice President & Chief Operating and Financial Officer
CFF Senior Staff
- Kathryn Brown – Chief Communications and Marketing Officer
· Bruce C. Marshall, MD – Chief Medical Officer
· A. Whitney Brown, MD – Senior Director of Clinical Affairs
- Michael Cavadel, JD – Senior Vice President & Chief Legal Officer
- JP Clancy, MD – Senior Vice President, Clinical Research
- Mary B. Dwight – Senior Vice President, Policy & Advocacy
- Albert Faro, MD – Senior Vice President & Chief Medical Officer
- Patrick J. Feeley – Senior Vice President & Chief Development Officer
- Marin Goings – Chief of Strategy
- Jack Mahler, MD – Chief Investment Officer
- Yvonne Massenburg – Chief People Officer
- Marybeth McMahon, PhD – Chief of Staff
- Molly Riley – Senior Vice President of Field Management and Volunteer and Donor Relations
- Steven Rowe, MD – Executive Vice President and Chief Scientific Officer
- Eleana Seek – Chief Audit and Risk Officer
- Sue Sullivan – Vice President and Head of Community Partnerships
Urgent Request for CF Foundation Assistance Regarding Child Welfare Action Involving a Child with Cystic Fibrosis
Dear Leadership of the Cystic Fibrosis Foundation,
My name is Denise Kruse. I am an adult with Cystic Fibrosis and I’m writing on behalf of Joy Zuraff because she is under a gag order and cannot speak for herself due to that restriction. She is facing Termination of Parental Rights on Monday, February 9, 2026, so time is of the essence that you step in to help. I am writing today to urgently request the assistance, guidance, and advocacy of the Cystic Fibrosis Foundation in connection with her ongoing child welfare case in Florida that now threatens the termination of her parental rights.
Joy is the mother of a beautiful little girl named Kenlee, who has cystic fibrosis. This mother has been fighting to keep her child and is a parent pleading for help on behalf of families across the CF community who are living in quiet fear.
Kenlee at the age 5, was taken from Joy by child welfare authorities nearly 2 years ago, after ordinary, well-recognized features of cystic fibrosis were misunderstood and mischaracterized as neglect. She now faces the possible termination of parental rights — not because she failed her child, but because she has a genetic disease.
Like many with CF, Kenlee is small. She has struggled with weight. She has had pulmonary exacerbations. She has had difficult reactions to medications. These are not failures of parenting. These are realities of cystic fibrosis.
Under Joy’s care, Kenlee had only two hospitalized exacerbations in her life. Medical exams at Nemours Children’s Hospital, a licensed CF Center shortly after she was taken documented that she was small but healthy, well nourished, and with good lung health. Yet the narrative against Joy kept shifting — first “lung failure,” then malnutrition — as each claim collapsed under the medical record.
What has happened to the Zuraff family exposes a terrifying truth: children with cystic fibrosis are at risk of being taken from loving homes simply for exhibiting typical CF symptoms.
This risk is magnified by the misunderstanding surrounding CFTR modulator drugs, particularly Trikafta®.
Like so many parents, Joy hoped Trikafta® would be the breakthrough — maybe the answer. But Trikafta® is not a cure for cystic fibrosis. It is one important step in an ongoing, iterative scientific process. There will be other drugs. There will be better drugs. Getting there will require research, funding, and time.
In the meantime, not every child will tolerate every therapy. The CF Foundation has published on its website letters from parents whose small children were unable to tolerate Trikafta:
https://www.cff.org/community-posts/2024-07/why-we-took-our-son-trikafta , https://www.cff.org/community-posts/2022-11/why-i-took-my-daughter-trikafta .
According to the Florida dependency courts, Joy’s parental rights are threatened because she has ‘not changed her thinking’ about a drug with an FDA ‘Black Box’ warning despite ample evidence that both her hopes AND her concerns regarding modulator drugs are justified.
Her daughter had a bad reaction to Orkambi®, which shares a component drug with Trikafta®. Joy did not refuse Trikafta®, she simply asked questions. She asked what would happen if Kenlee’s liver did not tolerate the medication. She asked whether the dose could be adjusted if the labs worsened.
Joy was told no — that if her liver could not tolerate the drug, she would simply be taken off it.
I want to be clear: Joy never denied her child Trikafta®.
She never refused treatment.
She never withheld care.
Joy did what parents are supposed to do — she paid attention, she asked questions and tried to protect her child from harm while hoping for the best possible outcome.
DCF has repeatedly shifted its justification for continued custody and now seeks termination of parental rights (TPR), relying on misunderstandings and mischaracterizations of cystic fibrosis itself.
As the CF Foundation knows well:
- Children with cystic fibrosis are often smaller in stature.
- CF patients commonly struggle to gain and maintain weight due to pancreatic insufficiency and fat malabsorption.
- Enzyme supplementation, antibiotics, and CF treatments frequently cause gastrointestinal side effects, including severe diarrhea and weight fluctuations.
In Kenlee’s case, antibiotic treatment routinely caused severe diarrhea—so severe that diapering with pull-ups was suggested by medical providers—resulting in temporary but significant weight loss. This was a known, documented reaction specific to Kenlee. At no time was Joy ever offered or advised to consider a g-tube for nutritional support, despite her repeated efforts to stabilize Kenlee’s weight through careful diet, enzyme administration, and close monitoring.
Joy acted consistently, attentively, and in good faith to meet Kenlee’s complex medical needs. Yet those very challenges—common and well understood within the CF community—were later reframed as evidence of neglect.
This case illustrates a broader and deeply troubling pattern: children with cystic fibrosis are uniquely vulnerable to child welfare intervention due to widespread misunderstandings of the disease’s presentation, growth patterns, and treatment side effects. Small size, fluctuating weight, frequent illness, and aggressive medical regimens are hallmarks of CF—not indicators of parental failure.
Compounding this concern is the increasing pressure placed on families to comply with specific pharmaceutical treatments, including CFTR modulators, even where long-term risks—particularly for very young children—remain incompletely understood. As the CF Foundation itself acknowledged in its 2023 letter to the Colorado Prescription Drug Affordability Board, for children ages 2–5 it is “too early to understand the long-term implications of Trikafta® on longer term health and well-being.” https://www.cff.org/statements/2023-10/cf-foundation-comments-colorado-pdab-trikafta .
Punishing a parent for exercising caution, asking questions, or responding to adverse effects is not child protection—it is coercion. Please let me restate firmly that Joy never refused Trikafta for Kenlee.
Kenlee’s case has now received extensive national attention across media, political, and advocacy spheres. A summary of details can be found at www.FreeKenlee.com .
Media coverage includes Stew Peters, The Hodge twins, Dr. Drew, Ann Vandersteel, America Out Loud News, Dale Richardson’s podcast, Broken Truth with John Davidson, Prism of America’s Education radio, the Navarre Press, South Santa Rosa News, and investigative journalist Key West Jess. The story has also been amplified by Brian Matta (producer of the Baby Cyrus documentary), Brian of We Are the Patriots, the Betrayal Project USA, We the People Shall Speak, The Redheaded Libertarian, Nathan DiPietro (“The Free Floridian”), and We Are the Power.
Political leaders and candidates engaging with or publicly addressing the case include Paul Renner (Florida gubernatorial candidate, 87.5K views on his coverage), Rachel Rodriguez (Florida gubernatorial candidate), James Fishback (Florida gubernatorial candidate, attending the TPR hearing), and John Frankman (Florida congressional candidate, attending the hearing due to its broader significance).
Legal and advocacy voices include attorney Tom Renz (who discussed the case on Dr. Drew’s show, with one segment exceeding 563K views), attorney Connie Reguli (parental-rights advocacy), John Davidson (founder of FreeKenlee.com), and Dr. Sheila Furey, a board-certified child and adolescent psychiatrist with over 30 years of experience.
The original cop-cam footage of Kenlee’s removal has circulated widely online, prompting confirmed disciplinary action, including the firing of at least one involved individual. CF parents nationwide are now beginning to speak out, recognizing the profound implications this case holds for families raising children with cystic fibrosis.
Families across the country with children who have cystic fibrosis are watching closely, fearful that what happened to my family could happen to theirs.
My request to the Cystic Fibrosis Foundation is this:
- That the Foundation publicly or privately clarify for child welfare authorities that CF-related small stature, weight instability, and treatment side effects are medically expected and do not, standing alone, constitute neglect.
- That the Foundation consider submitting an amicus letter, medical statement, or professional clarification regarding cystic fibrosis and its management in young children.
- That the Foundation affirm that parental caution, individualized care decisions, and concern about adverse effects are consistent with responsible CF parenting—not evidence of harm.
- That the Foundation recognize and address the growing risk of medically complex CF children being swept into the child welfare system due to misunderstanding rather than maltreatment.
Kenlee’s life, her bond with her mother and sister, and the integrity of CF family care are all at stake.
I am asking the CF Foundation to stand with evidence-based medicine, informed consent, and the families who rely on your leadership.
Thank you for your time, your consideration, and your commitment to children with cystic fibrosis.
Respectfully,
Denise Kruse
Adult living with Cystic Fibrosis
