Strong Parents Care for Their Two Young Children with Rare Conditions

No family faces life’s unexpected challenges better than the family of Bella and Liam Brya. Allison and her husband, Bill, deal with the struggles of having two children, Bella and Liam, with hereditary hemorrhagic telangiectasia (HHT), which is also known as Osler-Weber-Rendu.
HHT is an intense rare disease that produces abnormalities with the formation of blood vessels. There is a disconnect between capillaries and veins, and these incorrect formations of blood vessels can lead to dangerous aneurysms. To learn more about HHT, click here.

Bella, who is now 12 years-old, experienced this when she was only 2-years-old. She survived after several surgeries. While the family was dealing with the hospitalization of Bella during her aneurysm episode, Allison went into labor with Liam, who is currently 9-years-old. Upon his birth, they quickly learned that Liam had challenges of his own. Liam was born without a right ear and outer canal. He also had an unrelated tumor that needed removal as soon as possible. Unfortunately, they couldn’t remove all of the tumor right then, or they risked comprising all of Liam’s small motor and speech skills because of its placement– by age two, they were able to remove the bulk of it. Additionally, he later on developed characteristics that were related to HHT. Bill, Liam and Bella’s father, also struggles with HHT– just last September, he underwent surgery to remove an aneurysm caused by the disorder. It was a lot for the family to handle all at once, but no one can put the situation in better words than them, “you just deal with it.”

Thankfully over time, Liam’s monthly checks turned into yearly, and he was well on his way to living a normal healthy life. While Bella continued to improve and shine in her own way, Allison expressed that after her aneurysm she was never the same– something indeed had changed, cognitively and physically. The aneurysm brought about six months of hydrocephalus. She now needs a feeding tube, and has lost both motor skills and verbal communication, although she still communicates through EyeGaze technology– but it’s nothing the Brya family couldn’t handle.

Although the family has faced more health challenges in the last twelve years than most family’s see in their life, they work as a cohesive team. Allison works part time, and Bill offers 24 hour support to the kids as a stay-at-home dad. Grandparents Rosemarie and Maury Melnik also help lighten the load, and take care of most of the paperwork.

Hearing about family dynamics and struggles like the Brya’s really puts life into perspective. They have dealt with more than their fair share and they keep trucking along, staying strong. You can never know how life will lay out for you, and sometimes it’s not what you want or need, but like the family says, “you just do what you have to do. You just deal with it. If plan A doesn’t work, go to B, C…” If there’s one thing we can all learn from them, it is to always keep pushing forward even when it’s tough.

The family started a GoFundMe project to benefit their two children. Liam would love guitar lessons and Bella’s life would have ease with an accessibility van. If you would like to support this amazing family feel free to visit their website and or their GoFundMe page. You can also read more about their story in The Herald-News.

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