Spencer’s Continuing Journey with Cystic Fibrosis (CF)

Spencer’s Continuing Journey with Cystic Fibrosis (CF)

Hi friends, families - baseball, softball, Rhode Island, Massachusetts, Vermont, URI - and gracious supporters we may not even know yet.

Summary

My name is Hiram Barber, Spencer's Dad. Over the last 3+ years, Spencer has been fighting a tough battle with Cystic Fibrosis (CF).

On August 14th, Spencer will undergo a second major surgery in less than a year to ease his intense CF related pain. I am seeking your support to raise $25,000 to help with the costs of this portion of his journey - medical, pain management, surgery, recovery, travel, living arrangements and expenses.

I am so, so proud of Spencer’s daily strength, grit, and determination to meet CF challenges head on with a sense of humor and a genuinely gracious heart.

The Latest Stage of the Journey

Thank you for all those that generously donated to his first Go Fund Me "Spencer’s Journey with Cystic Fibrosis related Pancreatitis." We are forever grateful for your generosity, thoughts, and ongoing prayers!

With help and advice from top experts in the world, Spencer underwent a complex surgery, TPIAT (total pancreatectomy with islet autotransplantation) in September ‘23.

Spencer’s TPIAT recovery has not been smooth. After months, and many dark and challenging hospital stays, it was finally determined that his TPIAT recovery was masking another, equally as painful, condition within his intestines. Fortunately, the condition can be treated with another major surgery. In an ideal situation, he’d have this surgery as soon as possible to remove the ongoing, persistent daily pain. However, he must wait to significantly reduce risks and complications that come from back-to-back major surgeries.

Unfortunately, the wait is complicated. Because of his condition, he is unable to eat nor digest solid food by mouth or feeding tube. As a result, he requires PICC line TPN (Total Parenteral Nutrition), a method of feeding that bypasses his intestinal tract. Further, his condition is mercilessly painful requiring a wide-range of daily pain management and coping techniques. As a result, he remains in a Minneapolis apartment, very close to his doctors, clinics, pain management specialists and visiting nurses.

Post-surgery, Spencer will learn how to eat solid food again, without PICC lines nor TPN. Hiis pain should be reduced and will work with pain management specialists to eventually resume normal daily living again for the first time in several years.

Despite the constant pain and limitations caused by this debilitating disease, Spencer has remained hopeful, strong, and determined to overcome these obstacles. He is actually looking forward to tackling his next challenges - a lifelong journey with CF, but with as little pain as possible.

Why We Need Your Help

While Spencer has insurance coverage, the out-of-pocket expenses - copays, prescriptions, Minnesota based living arrangements, pre and post-surgery care, ongoing travel to meet with his teams - are significant. I am seeking support to raise $25,000 to help cover these costs as well as his lengthy recovery and then his ongoing medical journey with CF.

How You Can Help

Your generosity can make a significant difference in Spencer's journey towards less pain, and improved circumstances to focus attention on the long-term effects of cystic fibrosis care.

Please share this GoFundMe page. Spreading the word is just as important as donating. Your continued support and involvement are greatly appreciated. We are deeply grateful for your generosity, thoughts, and prayers.

Thank you so much for being a part of this journey with us!

With heartfelt gratitude,

Hiram ('Dad')