Save Celia Grace with Gene Therapy has raised $47,266 out of their goal of $300,000
PLEASE NOTE: This fundrasier has closed.
UPDATES
About the Campaign
Heather Bozeman is organizing this fundraiser on behalf of Kassie Hamlett.
Please help me raise money for my sister and brother-in-law to save their daughter’s life! In March of 2020, Gary and Kassie found out that their sweet daughter, Celia Grace (4), has a fatal genetic disease. This disease is called Metachromatic Leukodystrophy (MLD). MLD is a rare, neurodegenerative condition that will take Celia Grace’s life without treatment.
Because Celia Grace’s MLD was caught early, she is eligible for gene therapy. This is a life-saving treatment that has only been available in Milan, Italy. Until now. For the first time ever, an individual will receive MLD gene therapy in the United States - this is my niece, Celia Grace. The Hamletts have waited months to begin compassionate use treatment. They got the green light and are now at the University of Minnesota’s Masonic Children’s Hospital. However, despite years of evidence showing the miracle of gene therapy (and a special application approved by the FDA) their insurance recently delivered a shocking and unwelcome surprise: refusal to cover treatment. The Hamletts are already in Minnesota and Celia Grace is ready to get her new, healthy genes, but without the funds, the treatment cannot proceed. This means they are forced to pay out of pocket for the therapy that will save Celia Grace’s life. Our goal is to raise $300,000 to cover the costs of MLD gene therapy.
Campaign Activity
See who supports your cause and what they have to say about it!
- All
- Comments
- Donors
Celia Grace's Story
When Gary and Kassie found out Celia Grace had MLD, to say they were shocked is an understatement. It was the last thing they expected to hear about their normal, happy, healthy-looking toddler.
But at the beginning of 2020, Celia Grace woke up one morning complaining that her belly hurt. Gary and Kassie took her to the ER. They did a CT scan and wound up at the Children’s Hospital of Alabama to look more closely at her gallbladder. After an ultrasound, the doctors found a mass inside. It was surgically removed and sent to pathology.
It was a Friday afternoon when the pathologist asked Gary and Kassie to come in and talk about the results. The doctor told them they found a neoplasm inside the mass associated with a rare disease called Metachromatic Leukodystrophy (MLD). After being referred to a geneticist, the diagnosis was confirmed and the Hamletts were devastated.
They met with a neurologist who told them there was no cure. However, there was this promising treatment called gene therapy, except the problem was that it was all the way in Milan, Italy. The prospect of moving halfway across the world was daunting. But Gary and Kassie knew they had to do whatever it took to save Celia Grace’s life. So they began prepping for a long journey ahead when something extraordinary happened. Celia Grace’s doctor called them up and said:
“What if I told you that your daughter is going to make history books?”
The doctor explained that for the first time ever, this MLD gene therapy will be performed in the United States and that their daughter, Celia Grace, was going to be the first US patient.
Despite all they’ve endured, this news felt like a blessing. The Hamletts then began prepping for a 3-4 month stay in Minnesota, where they are now, while Celia Grace undergoes gene therapy. What they didn’t expect was that right before the treatment, their insurance would come back with a denial. This, despite the FDA approving a special application to treat Celia Grace specifically. Now, they have to pay out of pocket and they urgently need your support!
Gary and Kassie have been so grateful for the assistance from their local community who’ve helped them get this far. Gary is a lieutenant and paramedic (for more than 27 years) and Kassie, who’s lived in Alabama all her life, works at a local bank. It’s been through the help of their friends and family, support from the police force network, and work colleagues that they’ve been able to get Celia Grace to Minnesota. Now, we need your help to save Celia Grace’s life.
Please consider donating! Every little bit helps. This treatment will save my beautiful niece’s life.
About the Disease
MLD is an extremely rare, fatal brain disease which destroys the protective fatty layer (myelin sheath) surrounding the nerves in the central nervous system. It aggressively takes away motor function and other abilities, which is why patients lose the ability to walk, talk, eat, and more. This disease is inherited from parents who each carry one copy of a mutated gene. If both parents carry the mutation, there is a 1 in 4 chance their child will contract MLD. When the symptoms show early in life, most children are not expected to live many years longer.
Here is a short 3 minute video that explains MLD and why it causes disease: https://www.youtube.com/watch?v=MBghKIUHcTI
Learn more about MLD at http://curemld.com/.
$26.25 was donated anonymously
Erin Dahn donated $10.50
$10.50 was donated anonymously
With love and hope from a complete stranger.
$26.25 was donated anonymously
$26.25 was donated anonymously
Hugs and prayers for your life saving journey