Family Using Benefit To Raise Awareness On Rare Disease

App users tap to watch video report.

JAMESTOWN, NY (WNY News Now) – A new parent is grieving the loss of one of her newborns as a rare disease affected her pregnancy. Now the family is planning on raising awareness for the debilitating blight that ravaged the homestead.

Four days after delivery, tragedy struck the family as baby Madalynn passed away. During the pregnancy, it was discovered that Mikaela has a rare blood disease, Hereditary Hemorrhagic Telangiectasia. The family is now hosting a benefit to not only raise funds to cover hospital costs, but also raise awareness of this rare and scary disease.  

“On December 21, Mikaela was admitted to the hospital at 24 weeks pregnant with twins. She found out that she had a rare medical condition known as H.H.T which also causes A.V.Ms. Due to her health complications, she was able to carry the babies to 30 weeks. At 30 weeks, they decided that her health was at risk and they decided they needed to deliver the babies,” said family member Cheryl Hand.

Unfortunately, the disease was passed from mother to children.

“They were both born with the same rare disease and the baby girl passed shortly after she was born from that disease and Myles still has complications because of this disease. So the benefit is for medical bills, the doctor’s appointments in the future, there’s going to be more surgeries for Mikaela and for Myles in the future,” Hand explained.

The family now wants to educate more people about H.H.T in hopes of preventing tragedy for others.

“She was born with it and we didn’t know until she was pregnant. The common things to look for with that is nosebleeds that occur often, they could be mild to severe. They look like little small dots and when you press on them they turn white, so those are some of the things to look for for the H.H.T and if anybody was to have those kind of symptoms they should try to figure it out with their doctor,” Hand said. 

The Bennett family wants to express their thanks to the community for coming together with overwhelming support.

“Thank you is not a big enough word to express the thanks that we have for everyone who has been involved,” said Hand. 

The Bennett family benefit will be held this Sunday at the Celeron Legion in Jamestown starting at 1 p.m. The Spaghetti dinner is 10 dollars a ticket, kids 5 and under are free. To purchase tickets, you can contact Mikayla Fardink at (716) 708-9342.


Be the first to comment

Leave a Reply

Your email address will not be published.


This site uses Akismet to reduce spam. Learn how your comment data is processed.