News
Website keeps family hopeful during daughters’ struggle with Alpha-1 Liver disease
“Sophia continues to amaze us with her strength and fortitude during lab procedures. She marched right into the lab, rolled up her sleeve, sat down and looked at the technician to begin her blood draw – all without the slightest whimper, or tear! This from a three-year -old little girl is enough to make a 42-year-old man cry!”
That’s from the latest update at Alpha-1 Bits, a website dedicated to recent news on Sophia and Tatum Boyer, two young girls diagnosed with Alpha-1 Antitrypsin-related liver disease.
From Left: Abigail, Sophia and Tatum
Their father, Brian Boyer, has recently started an email campaign and website to share the family’s story and raise awareness about Alpha-1.
Now three, Sophia was only 15 months old when she received a liver transplant, and continues to struggle with rejection. Her sister Tatum, who is four, also battles liver disease and though it is progressing more slowly than Sophia’s did, her doctors say that she will need a liver transplant as well. Both girls are constantly in and out of the hospital getting checkups and evaluations.
With the extremely high cost of transplantation, prescription drug prices, continuous medical bills from various doctors and little help from the family insurance plan, the Boyers have been hit hard financially. They are now heavily in debt and “recently came close to losing our home,” said Brian. With Sophia’s transplant rejection issues and Tatum’s diminishing liver health, there seems to be no end in sight for the emotional as well as financial distress.
Despite all this, the Alpha-1 Bits website is full of smiling family photos and hopeful updates. The family shares their story as it unfolds and welcomes all questions, comments and support. Visitors can learn the latest about the family’s successes and hardships as well as make a donation to their medical fund at www.alpha1bits.info.
“If people are willing to give us five minutes of their time, write something in the guestbook, and/or donate to the Boyer Medical Fund – it could make a huge difference in our lives,” said Brian Boyer.
The Boyers hope to spread the word as far and wide as possible about their own story as well as the often-unknown facts about Alpha-1 and organ donation. They are looking to help and be helped by reaching out and raising awareness.
Read the news story on our website:
Watch the Picture Story of Sophia and Her Family on our website.
