Hello Friends, Family & Supporters,
At just one month old, Jeremiah was hospitalized due to seizures. His record is 73 in 24 hours. What began as a diagnosis of infantile epileptic spasms later revealed something far more complex. Jeremiah has a rare (about 100 confirmed cases) genetic mutation to his PIGA gene, which affects nearly every system in his body. This condition causes uncontrollable seizures, global developmental delays, visual impairment, respiratory challenges, low muscle tone, gastrointestinal issues, and heart and kidney abnormalities. It also causes struggles with sleep, swallowing, and brain development. There are no cures, only symptom management. The average life expectancy is two years and more than 50% pass away in early childhood.
Jeremiah's journey has been anything but easy...and we are only at the beginning. Due to his extensive medical needs, we have to travel out of town regularly for his specialized care. He sees a long list of medical professionals: a pediatrician, geneticist, neurologist, nephrologist, cardiologist, surgeon, ophthalmologist, audiologist, orthotist, EENT, chiropractor, early interventionist, speech therapist, occupational/feeding therapist and physical therapist.
This has been the most difficult chapter of our lives. I'm physically and emotionally exhausted. I’ve reached out to countless agencies, only to be met with long waitlists or no help at all. That’s why I’m turning to my community for support.
All of the costs are overwhelming, especially as a single mom. I’ve resorted to using credit cards and selling personal items just to keep up, and the financial strain is becoming unmanageable. I wasn't able to accept my seat in nursing school fall 24' and am unable to work a full-time job. I have been let go from 2 positions because I frequently had to take time off for hospitalizations, surgeries, doctor appointments, and therapies.
🌟 How Your Donation Helps
Every dollar raised goes directly toward Jeremiah’s care and quality of life. Your support makes a real difference in the following ways:
🩺 Medical Care & Therapies - Estimated: $15,000 -$20,000/year
Jeremiah sees over a dozen specialists and receives multiple weekly therapies (physical, occupational, feeding, speech, and early intervention). Even with insurance, treatment, medicine, and uncovered services add up quickly.
🛠️ Specialized Equipment & Developmental Tools - Estimated: $5,000 - $10,000
This includes adaptive gear like feeding chairs, visual stimulation tools, positioning aids, and mobility equipment not covered by insurance.
🏡 Safe Home Modifications - Estimated: $5,000 - $10,000
As Jeremiah grows, we’ll need to make changes to our space to ensure it’s safe and accessible for a visually and developmentally impaired child.
🚚 Relocation Assistance - Estimated: $5,000 - $8,000
Our current location limits access to specialized care. Relocating closer to his medical team will improve consistency in treatment and reduce the physical/emotional strain of constant travel.
🚐 Reliable Transportation - Estimated: $15,000 - $25,000
We desperately need a larger and more reliable vehicle to accommodate Jeremiah’s growing medical equipment and supplies as his condition evolves.
🎯 Goal: $50,000
This will allow us to meet the most immediate and essential needs...especially nursing care, equipment, relocation support and reliable transportation. IF we surpass this goal, additional funds will go toward extended nursing coverage, travel costs for hospitalizations, and long-term medical planning.
💸 Ways to Give
If you'd like to donate directly, you can also use:
- CashApp/Venmo $httpjustjazz
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Mail a check, gift card or note to:
Jeremiah / Jerry
1646 W Hwy 160 Ste #105-178
Fort Mill, SC 29708
(Please write “For Jeremiah” in the memo.)
Every dollar helps, and every act of kindness matters. If you’re unable to give financially, please consider sharing our story. If you know of any resources or even have a kind word/story to share, you can contact us here or on IG/TikTok @JeremiahsJourney3. Together, we can raise awareness for CDG and offer Jeremiah the life he deserves...safe, supported, and full of hope.
All donations will be used solely for Jeremiah’s care and well-being. We are deeply grateful for your compassion, prayers, and generosity.
From the bottom of our hearts...thank you for reading this and standing with us!
With love and lots of thanks,
Jeremiah & His Mommy ❤️
Jeremiah 17:14: "Heal me, Lord, and I will be healed; save me and I will be saved, for you are the one I praise."
