Join Team Bennett: Help Him on His Road to Recovery

Update October 14, 2023:

Bennett’s surgery went really well, and he’s recovering beautifully. He’s been proudly calling his G-tube his “magic tube” and showing it to everyone he meets, which has been wonderful to see. It’s such a relief to see him in good spirits after everything he’s been through. 

While he’s still experiencing pain, we’re managing as best we can without a known cause just yet. The medical team has further investigations in the works. 

Full Story:

If you’ve ever met Bennett, you know how strong and resilient he is. But life has thrown some overwhelming challenges his way. Bennett has been diagnosed with a rare genetic condition—ANKRD-17 gene-related Neurodevelopment Disorder—on top of Autism, ADHD, and severe gastrointestinal complications. Since April 2024, Bennett’s health has been declining rapidly. He’s lost over 25 pounds and struggles to eat even 500 calories a day due to extreme food aversions, sensory sensitivities and chronic constipation, which have now led to his hospitalization since September 23, 2024.

Recently, Bennett had an NG (nasogastric) tube reinserted under general anesthesia to help clear out his system and relieve his abdominal pain. He is undergoing G-tube surgery to provide long-term nutritional and bowel care support on October 13, 2024. His medical team is closely monitoring his condition, and while they are doing everything they can, the road ahead is uncertain. Bennett is facing daily treatments, therapy, and procedures, and the emotional toll on him and his family is immense. Darian, his mom, has been an incredible advocate for his care, but the financial strain from the specialized support Bennett needs is becoming too much.

How You Can Help:

Even though Bennett’s hospital stay is covered, there are still significant costs that his family needs assistance with, including:

1. G-Tube Supplies: Bennett will be going home with a G-tube for long-term nutritional support and bowel care administration. While some of the supplies for this are covered, many essential items are not, and the family will need to purchase these on an ongoing basis.

2. Specialized Nutrition and Medications: Bennett requires specific nutritional supplements and medications, which are essential for his recovery and not fully covered.

3. Therapies: Bennett’s ongoing occupational, behavioral, and feeding therapies are vital to his development and recovery but come with out-of-pocket expenses.

4. Travel Costs: The hospital and care facilities are at least an hour away, and Darian is covering travel and accommodation expenses for Bennett’s ongoing treatments.

Why Your Support Matters:

Bennett has a long journey ahead, but with the right care, he can overcome these challenges. Every contribution, no matter how small, will help lift some of the financial burden and allow Darian to focus on what really matters—Bennett’s health and healing.

Thank you from the bottom of our hearts for supporting Bennett and Darian during this incredibly difficult time.

With deep appreciation,

Friends of Darian & Bennett