We are the Carter family: Shannon, Charlie, Jordan, Dakota, and Lincoln.

Lincoln is our strong, joyful 4-year-old son who loves being outside just as much as relaxing on the couch surrounded by the people who love him most. Lincoln was born with a rare genetic mutation, the same diagnosis as his older brother, who has since passed away. From the very beginning, Lincoln has faced challenges most children will never know. Along with his genetic condition, he was also born with cardiomyopathy and depends on us for all of his daily care.

When Lincoln was just 8 months old, we began noticing unusual spasms. Deep down, we feared they were seizures. On November 10th, 2022, our fears became reality when we learned Lincoln had infantile spasms, a severe and devastating form of epilepsy. Since then, our lives have revolved around medications, therapies, specialists, emergency visits, and hospital stays as we continue fighting to give Lincoln the best quality of life possible. He was recently diagnosed with LGS another difficult to treat form of epilepsy.

Epilepsy has taken skills away from Lincoln, but he continues to fight every single day.

This past year has brought even more challenges. Lincoln started preschool last September, but illnesses, seizures, and unexpected medical setbacks kept him from attending as much as we hoped. The day after his 4th birthday, we brought him in for pain in his leg and foot, only to discover it was broken. He spent nearly 2 months in a cast, traveling back and forth to Boston every 2 weeks for follow-up appointments.

At the same time, we continue searching for treatments to control his seizures. Recently, we tried a medication that reduced his seizures by 60–70% in less than 24 hours. For the first time in a long time, we felt hope. Unfortunately, Lincoln’s body had a severe adverse reaction, and we were forced to stop the medication.

But even through the heartbreak, we witnessed something incredible.

Since that medication trial, Lincoln has started making more sounds, kicking his legs constantly, moving himself in a full circle on the floor, and showing glimpses of skills we thought we may never see. Watching him gain pieces of himself has been emotional and inspiring beyond words. We hope he’s able to hold on to these skills even as the seizures start to ramp back up.

Lincoln now has several upcoming appointments in Boston to discuss guided hip growth surgery this summer, along with possible surgical options to help control his epilepsy. We are doing everything we can to keep him safe, comfortable, and included in everyday life.

This is where we need help.

As Lincoln grows, so do his needs. Our home must now be modified to safely care for him as his mobility and medical needs become more complex. We are working toward making our bathroom accessible, creating safer spaces for transfers and daily care, and adapting our home so Lincoln can safely relax, play, and move around. Because his bones are fragile, even routine transfers require extra care and support.

One of our biggest long-term goals is a wheelchair-accessible van so Lincoln can continue attending therapies, school, specialist appointments in Boston, and simply experience life outside our home safely.

Donations will also help cover:

• Home modifications and accessibility needs

• Medical equipment not covered by insurance

• Travel expenses to Boston for specialists and surgeries

• Hospital parking, gas, meals, and overnight stays

• Ongoing therapies and care needs

Despite a very difficult winter filled with illness, we are incredibly grateful that we’ve managed to keep Lincoln out of the hospital thanks to the “mini hospital” we’ve built at home and the support of his amazing home nurses.

As a family, we know how hard it is to ask for help. But we also know it truly takes a village. Every donation, share, prayer, and message of support helps lighten the weight our family carries and helps us continue giving Lincoln the fullest, safest, and happiest life possible.

Thank you for loving Lincoln alongside us.