Help Support Sweet Hampton and His Family

For the past five months, Sweet Hampton has been in and out of the hospital, facing a number of medical challenges. He and his devoted mom, Ellie, have been staying at Cincinnati Children’s Hospital, far from their home in Tennessee. Meanwhile, his dad, Shea, and big sister, Hattie, remain at home, doing their best to support from a distance.

Hampton has received multiple diagnoses and has required extensive care, which has led to significant medical expenses. Ellie, who owns and runs her own small business, has had to pause everything to be by Hampton’s side full-time—her focus has been entirely on taking care of her baby boy.

To help ease the financial burden during this incredibly difficult time, Hampton’s cousins have created this GoFundMe.

If you know Hampton, you know he is truly the happiest, sweetest little boy. Even through months of hospital stays and countless procedures, his joyful spirit continues to shine.

Any support—whether it’s a donation, a share, or a prayer—means the world to this family. Thank you so much for your love and kindness.

⸻

Posted by Ellie

Welcome to Hampton’s fight. His fight is our fight.

Our sweet Hammy has been a fighter since the very minute he was brought earthside at 32 weeks. He had a 3.5-week NICU stay and had trouble gaining weight from the beginning.

After a hard battle with RSV at 3 months old and a lot of pushing for further answers, a stool sample was taken and showed that his pancreas was severely insufficient. GI did a procedure to secrete hormones directly from the pancreas endoscopically to confirm the diagnosis. His pancreatic enzymes came back extremely low. He was then diagnosed with Exocrine Pancreatic Insufficiency (EPI). The next step was determining why at 6 months old his pancreas wasn’t working. He underwent a slew of tests, including a genetic panel done by Cincinnati Children’s for common causes of EPI. One panel was lost, the second one clotted before arrival, and the third finally made it to Cincinnati. Results were far from what we expected. Hampton tested positive for 3 CFTR mutations, also known as Cystic Fibrosis mutations. That led us to be referred to Cincinnati’s Pancreas Care Center.

On March 7th, our world began to change before our eyes. A simple head drop while crawling when I picked him up from school was the beginning of the spiral of events. He continued to have head drops and began having muscle weakness. He started regressing and not being able to roll over, having to have help sitting up, and lost all appetite. We began our inpatient journey with Cincinnati Children’s on March 22. He continued to show rapid progression of symptoms and loss of muscle tone. He began having unconscious episodes where he lost all control of muscles. By week three inpatient, he had lost the reflexes on the right side of his body. The genetics team did a rapid genetic panel and the news was devastating.

Hampton tested positive for a very rare progressive neurological developmental and neuromuscular condition. Because of its rarity, his future is unknown. We know he will require extensive therapies to help Hampton be the best Hampton he can be. Case studies have ranges of severity but they feel based on Hampton’s presentation and progression thus far they can categorize him as a more severe case. The geneticists worked hard to identify where the genetic mutation was in his brain. His mutation lies near a critical function domain in his brain.

Hampton also tested positive for the autosomal dominant form of Muscular Dystrophy Limb Girdle. At this time, there are no documented forms of his variant seen in the disease but he will eventually undergo a nerve conduction study and muscle biopsy for that.

At this time, Hampton is not clinically diagnosed with Cystic Fibrosis itself but he has been diagnosed with CRMS, the metabolic form of Cystic Fibrosis. This can be advanced clinically at any time to full-blown CF.

This tiny little guy has quite the fight. He is so brave and so loved and we need all the prayers for a miracle as we navigate these diseases and provide Hampton the best life he can possibly have.